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CDC Revises Its Information on ME

Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments below by clicking on the updated version of the article by clicking here: CDC website article text. Community-based changes to our recommendations are in red ink.

In September 2016, I attended a meeting at the Centers for Disease Control as #MEAction’s representative.  Also present were Dr. Ken Friedman, Dr. Mark VanNess, Mary Dimmock, Dr. Lucinda Bateman, Dr. Lily Chu, Wilhelmina Jenkins, Dr. Anthony Komaroff, Dr. Charles Lapp, Dr. Susan Levine, Dr. Dan Peterson, and many other advocates, clinicians and researchers, in order to provide recommendations to change the portion of the CDC’s website on myalgic encephalomyelitis geared to the public.

As of late 2016, the website recommended graded exercise therapy and cognitive behavioral therapy as best interventions; did not discuss severe ME or its consequences; and contained language that stakeholders found to be dismissive of the disease as a whole.  

As of July 2017, the CDC removed recommendations for graded exercise therapy and cognitive behavioral therapy. Then, in a second round of meetings in which Terri Wilder represented #MEAction, stakeholders gave feedback on the section of the website geared to clinicians.

On July 12, 2018, the CDC launched these new pages geared to practitioners. The CDC has altered and edited pages over time; however, not all recommendations made by stakeholders were taken on board. As a result, some sections of the site continue to misinform medical providers and potentially put patients at risk.

*Note: this is an analysis of the CDC’s content on ME, not solely the July update to the clinicians’ section

* The shaded boxes display text from the CDC webpage.

8/1/2018: If you would like to download these recommendations as a pdf, click here: CDC REVISES ITS INFORMATION ON ME

The Good:

The CDC’s website outlines that exercise can be harmful:

Any activity or exercise plan for people with ME/CFS needs to be carefully designed based on individual presentation with input from each patient. If possible, evaluation by a rehabilitation specialist may be beneficial. For some patients, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS.

There is emphasis on pacing:

ME/CFS affects patients in different ways, and treatment plans should be tailored to address symptoms that are most disruptive or disabling for each patient. It is best to proceed slowly. Expecting patients to return to usual activities should not be the initial management goal because the physical and mental exertion can aggravate symptoms and debilitate patients. An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing), and requires that patients learn to “listen to their bodies” to be aware of their individual exertional limits, aiming to remain as active as possible without exceeding them. Clinical experts have observed that this process requires “trial and error.”

The CDC re-affirms the assertion of the National Academy of Medicine Report (2015) stating that ME isn’t psychiatric and there is nothing to the ‘secondary gain’ narrative:

ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.

For the first time, the CDC includes representations of mild, moderate, and severe myalgic encephalomyelitis, and recognizes the heterogeneity of disease presentation.  The site now outlines variability for the individual:

The severity and frequency of the symptoms can vary among patients and can vary for an individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness. Some patients may not be obviously ill-appearing during clinical evaluations. However, if patients are severely affected or are having an exacerbation of their symptoms, even visiting a clinic for care might not be feasible at times. Thus, healthcare providers may not see patients when their symptoms are most severe.

And within the ME population:

The spectrum of ME/CFS can range from mild to severe. For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life. Those patients who are moderately impaired might, for example, have trouble maintaining a regular work schedule or standing and sitting for prolonged periods. Patients who are severely or very severely affected by ME/CFS include those who are completely wheelchair-dependent and house- or bed-bound for months or even years. Some primarily house-bound patients have increased symptoms after trips for healthcare or after performing daily tasks that healthy people take for granted, such as bathing, showering, and cooking meals. Those who are bed-bound might need assistance performing even these basic tasks.

The etiology and pathophysiology section describes common biomedical aberrations in people with ME:

The Etiology and pathophysiology page reiterates that ME is an embodied illness rather than a psychological disorder.

It also lists several common findings in people with ME, including NK cell dysfunction and T cell dysfunction; elevated inflammatory cytokines and increased autoimmunity; cellular metabolism abnormalities; neuroendocrine issues; and issues maintaining heart rate and blood pressure.  These specific abnormalities both underline that ME is an embodied illness and reiterate the need for diagnostic testing.

The CDC acknowledges the lack of education and negative attitudes among healthcare providers:

Some of the reasons that people with ME/CFS have not been diagnosed include limited access to healthcare and a lack of education about ME/CFS among healthcare providers.
Most medical schools in the United States do not have ME/CFS as part of their physician training.
The illness is often misunderstood and might not be taken seriously by some healthcare providers.
More education for doctors and nurses is urgently needed so they are prepared to provide timely diagnosis and appropriate care for patients.

The Bad:

Advice on exercise may still lead to harm.

For some patients with ME/CFS, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure for ME/CFS.

While we welcome the inarguable statement that exercise cannot cure ME, parts of this paragraph are troubling.  

Moderate and severe patients are not capable of even the levels of activity necessary to avoid deconditioning; and for severe patients, it is not possible to shower or prepare a meal even when those activities are broken down into smaller parts.  

In addition, the suggestion that rehabilitation specialists and exercise physiologists who know about ME are generally helpful is misleading.  Few specialists understand ME well enough to understand that the price a patient pays to overcome deconditioning may be a permanent worsening of baseline symptoms.  And a rehabilitation specialist — a professional who helps patients resume their normal lives after an accident, injury, or trauma — does not seem appropriate in a disease where so few will ever ‘resume their normal lives’.  

ME/CFS affects patients in different ways, and treatment plans should be tailored to address symptoms that are most disruptive or disabling for each patient. It is best to proceed slowly. Expecting patients to return to usual activities should not be the initial management goal because the physical and mental exertion can aggravate symptoms and debilitate patients. An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing), and requires that patients learn to “listen to their bodies” to be aware of their individual exertional limits, aiming to remain as active as possible without exceeding them. Clinical experts have observed that this process requires “trial and error.”

Likewise, returning to usual activities is neither an initial nor a final management goal.  Returning to usual activities is not typically possible for people with ME.  

There is a risk that patients and clinicians may draw incorrect conclusions from this statement.  Just as importantly, insurance companies may judge that it should be possible for patients to resume their normal lives — given time, and the proper rehabilitative therapies. 

There is a conflict here between overt statements made previously by the CDC that few adults will ever regain full function, and a seemingly intractable emphasis on rehabilitation and recovery.

Moreover, in the pediatric section, it appears some parts have been edited more closely than others, leaving statements side-by-side that contradict one another.  There is an emphasis on “push-crash” cycles that is worrying:

Patients with ME/CFS need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of ME/CFS symptoms).

Most patients will attempt to fulfill their activities of daily living, if they are able. The focus on finding a balance between inactivity and excessive activity is misplaced. Maintaining our baseline is a matter of staying within our aerobic limits; yet even that isn’t always enough to prevent a crash.

Moreover, an emphasis on push-crash cycles supports the narrative that the patient is at fault for their debility by choosing a behavior that is maladaptive or incorrect.  This is especially frustrating in light of the fact that in addition to activity, crashes can be caused by sensory stimulation, like bright light or loud noises; infection; hormonal changes; or a reaction to a new medication, food, or chemicals… factors that are generally not within the patient’s control.

The pediatric section appears as though important new information has been added, but contradictory elements have been left intact:

Any activity or exercise plan for children with ME/CFS needs to be carefully designed with input from each patient. While vigorous aerobic exercise is beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate.

For patients with ME/CFS, it is important to find a balance between inactivity and excessive activity, which can make symptoms worse. This means a new way of thinking about daily activities. For example, daily chores and school activities may need to be broken down into smaller steps.

A symptom diary can be very helpful for managing ME/CFS. Keeping daily track of how patients feel and what patients do may help to find ways to make activities easier.

Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure for ME/CFS.

Parents/guardians and doctors of children with ME/CFS can work with teachers and school administrators to adjust the school load for children with ME/CFS. While it is true that exercise can benefit children with certain chronic illnesses, children with ME/CFS should avoid activity that makes their symptoms worse.

A child with ME does not need an exercise plan, though they might benefit from help with pacing or activity management. The above contradicts other sections of the website, which explicitly advise against exercise.

Prognosis is painted in a positive light.

Since ME/CFS can be unpredictable and can change over time, evaluation of each patient’s condition at scheduled intervals is warranted. As with many chronic illnesses, length of intervals between visits might vary from patient to patient and depends on the severity and degree of symptom improvement and control. The scheduled re-evaluations serve as opportunities to adjust the treatment strategies as needed based on patient status. While it may take some time to experience an improvement and not all patients may improve significantly, it is important to communicate to patients that improvement is possible.

And:

The percentage of ME/CFS patients who recover is not well-studied, but there is evidence and experience to indicate that patients benefit when diagnosis and management are timely and appropriate. Some patients return to full function. Some who improve continue to experience symptoms and do not achieve pre-illness levels of function, and many who improve continue to modify their activities to remain improved or symptom-free. Some do not improve or, in fact, worsen over time. Even though more studies are needed, most experts agree that children, including teenagers, with ME/CFS have a better chance of full or partial recovery than adults

Anyone who has gone undiagnosed for years or even decades understands that an accurate diagnosis and useful management strategies — such as avoiding overactivity and providing symptomatic relief — can improve quality of life.  But there is no evidence that early intervention affects the likelihood of full recovery. When the CDC has been so cautious regarding what it recommends as treatment, this assertion, which is insupportable with current evidence, stands out.  In addition, while it is technically true that “some patients return to function,” the recovery rate is only 5% after five years. This oft-repeated figure likely comes from a meta-analysis that used the Fukuda and Oxford criteria, which are known to capture patients who are not as ill on average as those who have been diagnosed with criteria that involve PEM; so these recovery statistics may well be inaccurate for CCC, ICC, and/or IOM-diagnosed patients.  

Diagnostic criteria are in a section called ‘Understanding Historical Case Definitions and Criteria.’

The name of this page — Understanding Historical Case Definitions and Criteria — disregards not just that many consider ‘older’ definitions such as CCC or ICC superior, but that many of them are still in day-to-day use in both research and clinical care. Many scientists, clinicians, and advocates strongly prefer the CCC or ICC for their greater level of detail and specificity; and others use multiple criteria in their research studies.  

The reliance on the IOM criteria can lead to omissions of neurological, gastrointestinal, immune, and other systems with dysfunction in ME, because the IOM does not require them for diagnosis.  Though additional symptoms are mentioned on the ‘historical definitions’ page, the framing makes it appear as though these symptoms are no longer important for diagnosis. This creates a knowledge gap that may prevent physicians from recognizing the disease in clinic.

The general practitioner is expected to develop a treatment plan.

Because ME/CFS is a complicated illness, its management may require input from a variety of medical professionals. Primary care providers can develop effective treatment plans. When expertise is available and accessible, these plans can sometimes be enhanced through collaboration with clinical specialists and a team of other health care professionals such as rehabilitation specialists, mental health professionals, and physical therapists.

There is no mention here of rheumatology, immunology, neurology or other specialities that might be important to someone experiencing the symptoms of ME.  The implication is that referral ought to be rare, and that physical therapy or mental health services are the extent of extra expertise a GP will need to address patient concerns.  This is especially troubling in light of previous CDC recommendations being graded exercise therapy and cognitive behavioral therapy!

As for specialists in ME itself, it is often difficult to find a physician who knows how to perform a thorough medical evaluation specifically for people with ME.  Many would have to travel across the country to see an expert in myalgic encephalomyelitis, provided they are physically and financially able. The lack of knowledgeable clinicians is a crisis in ME care, and it would have been useful if the CDC had chosen to show clinicians that if they specialize in ME, they will be filling a void of expertise in the medical community.

Milder cases are presented as the norm.

In the ‘Patient Voices’ section, three people with ME discuss their experiences with the disease, presumably to represent the full spectrum of illness experience.  However, these are a physician who works six hours a day with a two hour break in between; a woman who finished her graduate degree, works part-time, and started a family; and a patient who spends a great deal of her time bedbound.  These narratives omit the severe patient — or ‘very severe’ patient — who may be unable to communicate, unable to tolerate sensory input, and may be fed through a tube. Communication with the caregiver of such a patient would have been welcome.

Severe patients are represented in some places in the site, but conspicuously missing in others, such as the section mentioned previously, in which high-energy tasks such as cooking a meal are still painted as possible if broken down into smaller chunks.

The etiology and pathophysiology section mentions emotional trauma as a potential trigger for ME:

The Etiology and pathophysiology page unfortunately lists ‘emotional or physical trauma’ as a potential trigger for ME.

There is no credible evidence that emotional trauma is any more associated with ME than it is in any other critical illness.

Sleep hygiene recommendations are often inappropriate in ME.

Sleep hygiene includes storing electronic devices away from the bedroom, being active during the day, and going to sleep at the same time every night.  Moderate and severe patients — those who are housebound or bedbound — spend the majority of their time in their bedrooms and represent one of four patients with ME.  They cannot store the items they need far away, be active, or sleep at regular intervals. Sleep hygiene advice may be very useful in other chronic diseases, but can be inappropriate in ME.

Recommended Changes to the CDC Webpages on ME/CFS:

We will be sending these recommendations to the CDC. Did we miss anything? What changes or additions would you like to see made? Write in the comments below.

Recommendation

Rationale

The entire spectrum of the disease from “mild” to “very severe” needs to be represented in every section of the website.

Very severe patients’ stories are still missing.  Their inclusion is vital to provide a complete and comprehensive picture of the disease.

It is important for healthcare providers to understand the needs of those who are very severely ill as this population can face enormous barriers accessing life-saving support.

Include the story of a patient or carer of a long-term, completely bed-bound patient in the “Voice of the Patient” section.

Under “The spectrum of ME/CFS can range from mild to severe” add: “those on the “very severe” end of the spectrum may even require parenteral nutrition.

In the Clinical Care of Patients with ME/CFS section, delete the “Primary care providers can develop effective treatment plans” and replace with “Primary care providers can coordinate effective treatment plans in collaboration with rheumatologists, neurologists, cardiologists, endocrinologists and, where possible, an ME specialist.”

Many ME patients are diagnosed with immune deficiencies, chronic infections, endocrinological issues and/or neurological abnormalities. The idea that primary care providers can manage ME patients on their own, especially those patients more severely affected, is unrealistic. We recognize that patients cannot always find or afford an ME specialist.

Remove “Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning.”

Very few exercise physiologists or rehabilitation therapists understand the unique exercise physiology of ME. Referring patients to non-experts runs a very high risk of causing harm especially if the clinicians do not understand the aerobic impairment that is part of the disease.

In the “treatment” section “Orthostatic Intolerance” mention the importance of confirming OI using a tilt table test or recording in clinic of blood pressure and heart rate in both a supine and standing position after at least 10 minutes of being supine. Simply taking blood pressure and pulse of a seated patient (as is standard) won’t reveal anything.

Moreover, it is important to mention the classes of medications available that can improve these symptoms as many general practitioners are unfamiliar with how to treat OI pharmacologically. Replace “Prescription medications can be considered” with “Prescription medications, such as beta blockers or medications for low blood pressure or low blood volume can be considered.”

General practitioners may be unaware of specific diagnostics, drugs or interventions that are not already a part of their knowledge-base.  By giving them specific and clear recommendations, the CDC will ensure clinicians are more likely to know how to proceed to best serve their patients.

 

Remove “push-crash cycles” and downgrade emphasis on ‘staying active’ and ‘avoiding deconditioning’.

‘Push-crash cycles’ imply the patient is responsible for their own debility, when in fact crashes are often caused by stimuli entirely outside of the patient’s control.  While avoiding deconditioning is desirable where possible, the emphasis on deconditioning devalues patients’ reality: that they are inactive due to necessity, not due to the lack of skilled physical therapy.

Remove emphasis on recovery.  The majority of patients do not return to good health.

While presenting a more positive outlook may decrease physician discomfort in dealing with a chronic and debilitating disease like ME, it is disingenuous to imply that patients will return to good health when so few do.  Moreover, this can delay patients from getting the social support they need to cope with a lifelong illness.

Add to “other common symptoms” the missing symptoms described in the CCC and ICC, including muscle weakness, muscle fatigability and fasciculations; aphasia; vision problems; genitourinary issues; heart palpitations; and/or dyspnea — as these are often part of a patient’s symptom complex.

Add the CCC and the ICC to the “Diagnosis” page and do not refer to them as ‘historical’.

The National Academy of Medicine’s 2015 criteria omits important neurological and autonomic symptoms from its diagnostic algorithm that may help physicians recognize the disease in clinic and recognize and address common symptoms.

Under “Factors complicating the Diagnosis of ME/CFS” in addition to “For some patients with ME/CFS, it may not be obvious to healthcare providers that they are ill” a factor that must be added is “Severe patients may be too ill to ever come to the clinic. Others may worsen over time, and be unable to visit the clinic anymore.”

In their clinics, doctors are more likely to see mild- and moderate-presenting than severe patients. This means that doctors’ clinical experience may create a misleading picture of the full range of disease severity.

A special thanks to the fleet of patients who have helped by engaging with the CDC for the past few years — or the past few decades.  I could not have written this without their feedback and assistance, and we would not be here without them.

 

Categories: Advocacy, All News, CDC, Featured news, Medicine, United States

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66 comments on “CDC Revises Its Information on ME
  1. Lorna Wilburn says:

    Please include Pain Management Specialists to the practitioners who may assist the Primary Care Physician.

    1. Jaime S says:

      Great idea Lorna; thank you.

  2. Dawn M Richardson says:

    I am not sure if this was brought up before or if it can be included, but there are times when the physicians, typically specialists, are too narrowly focused on a specific symptom or body system. There should be a more holistic approach if a patient keeps returning for symptoms and tests are inconclusive. Sometimes it isn’t that the result is normal, it is just not seen on the context of the entire person’s physical presentation and recent health history. From personal experience, most every blood test I had for the last 2 years showed a borderline or low sodium result that wasn’t extreme enough to even be mentioned and the symptoms of hyponatremia are so generic they match most illnesses. I was recently able to see a chart of my lab results in my electronic patient record, and I have a 2 year history of hyponatremia that was never mentioned at all. Now if I can see it, I am sure the physicians can access that and even more. But there is very little attention paid to the patient’s chief complaint it seems.

    1. Jaime S says:

      Dawn,

      I do think a line about this idea wouldn’t go amiss. Another commenter was talking about how it’s not as though there is one, important symptom but that they all come together to affect our well-being. That being said, ideally, a clinician will be keeping an eye out for unusual imbalance.

      I have a similar story to yours: my IgA has always been low. However, there was no set range provided by the testing company the first time it was tested, so my GP ignored the low result for years. Shocking, ordering a test you aren’t sure how to interpret!

      1. Maschelle Mashburn says:

        I’m constantly either just below the low end of “normal” in blood work for potassium and Sodium/saline (can’t remember what I jyst read..) and have been told to “use more salt, and eat a banana every other day. I already use more salt than is wise for otger conditions I have. And a banana every day only raises my levels to the line between” low” and abnormal/below low.. which I discovered on my own perusal of lab results on my bloodwork. I am also waaayyy below “normal low” in my Vitamin D levels, even with prescribed supplementation. The extremely low vitamin D began before I was mostly bedridden and unable to tolerate sunlight.

        I really do think something needs to be mentioned that patients that are on the borderline consistently for being below normal on certain test results it should be noted as abnormal for this disease since it fluctuates two below normal levels and then back up to borderline. It causes symptoms that I believe based on my experience with it that makes and extremely uncomfortable and difficult existence even worse with manifestation of symptoms related to these deficiencies.

        1. Jaime S says:

          I’d agree with your assessment, Maschelle. For what it’s worth (and I’m not a doc and this isn’t medical advice) there are a few supplements I take way beyond the ‘recommended’ amount, and I include Vitamin D in that. It took a lot of work to get mine up into the normal range, and even after that, I feel best when it’s reading as ‘high-normal’ at the doctor’s office.

          We as patients who have spoken to dozens of other patients are relatively certain it’s true that a lot of values are ‘low-normal’ or ‘borderline’, but there isn’t a peer-reviewed study to say so… yet; and doctors trust peer-reviewed studies. Some of them don’t trust *those*, because they’re waiting for a meta-analysis that summarizes dozens of such studies!

          It’s NOT anecdotal to say that people with ME tend to have low Vitamin D levels, however. There are many, many studies that correlate fatigue as a symptom with low D, and here’s one that found orthostatic intolerance — present in the majority of ME patients — was associated with low Vit D: https://www.ncbi.nlm.nih.gov/pubmed/21886073. I just chose a study; if you look, there are quite a few. Here’s one more that found low Vitamin D in ME: https://www.ncbi.nlm.nih.gov/pubmed/20209476

          There is probably a lot more they could’ve found evidence to say, frankly. Checking Vitamin D, iron, and B12 levels is probably a really good start for a clinician who needs to study up on the disease, because these are often low in patients and it can significantly improve their quality of life if the problem is patched.

  3. Kristina says:

    Great observations and recommendations! Please make sure to point out what the CDC as done well also. I think showing praise will help to continue the (hopefully ongoing) dialogue.

    Thank you to everyone involved with these recs and the MEAction website.

    1. Jaime S says:

      Thank you very much, Kristina! We will be sure to mention the positive aspects of the changes as well.

    2. Lori says:

      Praising weak efforts of the CDC doesn’t help. Clear, focused, researched, angry-but-calm activism is what helps. Heaping praise on misdeeds just makes us look confused and weak, and is a waste of precious energy. Clarity and persistence, not groveling, is what will make a difference.

      There are people who deserve praise: doctors and researchers who have listened and acted, patient advocates and activists who have been steadfast, often despite limitations with their own health. These people deserve our deepest gratitude.

      1. Jaime S says:

        Do you believe this reads as grovelling, Lori?

  4. Mary Garrido says:

    Primary Care Providers should not be responsible for coordinating a treatment plan.

    The PC should be able to complete testing to rule out other disease possibilities.

    Once that has been accomplished and a diagnosis has been made, or if they are unable to make a diagnosis, then the patient should be referred to a specialist for long term health care.

    If the health care provider does not have a qualified specialist in network, then the patient should be referred out of network asap.

    If a patient is left in the hands of a PC, there will be a delay in treatment.

    PCs are over worked, over booked and do not have the resources to treat PWME and this provides ample opportunity for a patient to get lost in the red tape of referral processes and waiting long periods of time to see a specialist.

    Also, attention needs to be given to patients who are considered moderate. Patients who are mild are able to get to appointments, they are able to work a little, etc.
    Severe patients more often than not have care givers who can speak for them and research is focused on the severe. As it should.
    But the moderate patient, who is mostly homebound, seems to be falling into a gray area, like the middle child syndrome. This population can be instrumental in aiding researchers and clinicians because they experience all of the symptoms and are able to communicate about the symptoms and can even participate in tests etc to help find answers.

    But my main concern is that we can not be left in the hands of a primary care to coordinate treatment.

    Nothing will change if we get stuck there.

    We need to be diagnosed – that is the most important.

    And from the point of diagnosis on, we need to be working with specialists and no longer seeing a PC for the disease.

    Persons diagnosed with cancer, heart disease, and other serious illness do not stay with their PC for treatment coordination.
    They move to a cardiologist, an oncologist, etc.
    We deserve the same.

    If health care providers do not have access to ME specialists, then they need to solve that problem – it is not for the patient to do all the research to find a specialist (which is currently happening).

    We just can not settle.
    We need to fight for medical equality.
    Especially since there is no cure, no perfectly effective treatment – that is why we need more than a primary care doctor to oversee our treatment.

    1. Bazia Zebrowski says:

      Completely agree! A pcp is not capable of handling this disease and we need an ME specialist who knows what other specialists are important in a case by case basis. There is a large amount of variability in ME and it needs a dedicated, problem solving , efficient networker, type medical professional to try and create solutions until research catches up.

    2. Jacki Jackson says:

      This was such an informative perspective. I totally agree a General Provider can not handle our cases. To validate my concerns, I’ve had a DO refer me out to other specialists, I know they are working on chief complaints, not ME in its entirety. Great presentation by our representatives! I enjoyed the article very much.

      1. Jaime S says:

        Thank you so much, Jacki!

  5. Adrian says:

    This is great and you have addressed many of my concerns.
    One big omission I see from the CDC website is the need for patients to stay under their abnormally low anaerobic threshold and to rest much more than they think they need to do. Pacing is fine but it fails many of us because we may feel fine (or think we are feel fine- e.g. mistake the “I can do anything feeling” indicating over activity and over stimulation for actually being able to do anything). Feeling fine while carrying out the activity doesn’t mean that we won’t be hit by PEM later.
    There seems to be an enormous reluctance to mention the use of heart rate monitors to regulate rest and activity , despite many pwME/CFS especially at the more severe end finding it extremely useful and its basis in objective science and it is not clear why the work of the Workwell Foundation is not being used.
    It is frustrating that the physiological and physical abnormalities listed in the CCC and the ICC are not included.
    The idea that most people recover is at odds with the science and is extremely harmful to people seeking support in Australia as we are refused support by our National Disability Insurance Scheme if the condition is not life long, permanent etc.. people who have been severely ill for 32 years have been refused support on the basis that they might get well.
    The CDC’s examples of coping should include the use of recumbent wheelchairs (legs out front as not all of us are as supple as Jen Brea and can tuck our legs up), pee jars, commodes, towels on the floor to lie on, cooking stations on the floor in the bathroom, sitting on the floor of the shower, bedpans, bed washes, being left alone and NOT washed.
    Chemical sensitivity is a huge issue that needs more substance as it’s impact on the severely ill is enormous – fragrances, cleaning chemicals…
    Noise sensitivity is a huge barrier and it has severe impact on the severely ill.
    Vibration from car trips..
    Sensory overload from noise/light/chemicals/vibration combined are barriers to obtaining medical assistance…

    1. Jaime S says:

      First, thank you Adrian, both for your kudos and for your detailed comment.

      “One big omission I see from the CDC website is the need for patients to stay under their abnormally low anaerobic threshold and to rest much more than they think they need to do. Pacing is fine but it fails many of us because we may feel fine (or think we are feel fine- e.g. mistake the “I can do anything feeling” indicating over activity and over stimulation for actually being able to do anything).”

      Something tells me you’re on S4ME, where we have been discussing both of these things!

      Thinking back to onset, I believe you’re right. It’s hard to *believe* that we need as much rest as we do when we are first ill; and often it’s hard to see the connection between PEM and activity, especially when it’s ‘rolling’ (perpetual) PEM; when it’s delayed; or when it’s due to some exposure or food item that you either did not notice at the time or never had any difficulty with until onset. Then there’s that stimulatory buzz, especially early on in the disease, that can temporarily give the patient the impression that they can do more, discussed here: https://www.s4me.info/threads/pem-timing-symptoms-and-levels-of-disability.5191/

      “There seems to be an enormous reluctance to mention the use of heart rate monitors to regulate rest and activity, despite many pwME/CFS especially at the more severe end finding it extremely useful and its basis in objective science and it is not clear why the work of the Workwell Foundation is not being used.”

      On searching pubmed, I found one article by Workwell authors that recommends the use of a heart rate monitor: *Conceptual** model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis *(https://www.ncbi.nlm.nih.gov/pubmed/20185614); and searching for heart rate monitor and ME or CFS or ME/CFS gives me zero results. It may be that people aren’t mentioning it because there is little published literature on it. If you know of some more, definitely reply — I was looking for this earlier and this is the first time I managed to find a piece of peer-reviewed literature that recommends it.

      This is also why we needed the Patient Voices section — if there isn’t enough peer-reviewed data to support a conclusion, the Patient Voices section could at least be utilized for this purpose: to discuss the things that patients know work for them, regardless of the state of the literature. It at least would give clinicians a place to start! My impression is that is not how Patient Voices was used, or is typically used. But when we’re looking at ME, there are a lot of valuable suggestions that patients could make that, if benign, really should be listed.

      “It is frustrating that the physiological and physical abnormalities listed in the CCC and the ICC are not included.”

      Yes — IOM says you *may* have these symptoms, but they aren’t required for diagnosis. I do feel that presenting the IOM as the only criteria in use may prevent clinicians who rely on CDC from being able to recognize patients as having ME.

      “The CDC’s examples of coping should include the use of recumbent wheelchairs (legs out front as not all of us are as supple as Jen Brea and can tuck our legs up), pee jars, commodes, towels on the floor to lie on, cooking stations on the floor in the bathroom, sitting on the floor of the shower, bedpans, bed washes…”

      Those are great ideas; thank you! Point taken about flexibility, though the crossover between EDS and ME is established. 😉

      Thanks again for this great feedback, Adrian; I really appreciate you taking the time, especially in this disease!

      Jaime

      1. Adrian says:

        RE: EDS yes some people with ME/CFS may cross over and also have EDS or in the alternative they are the same/subsets of the same disease. Prof. Peter Smith at the NCNED is of the view that your diagnosis is often largely dependent on the type of doctor you are sent to.
        Primary Care is not suitable for a disease that is complex and at odds to other diseases i.e. general exercise/sleep advice is wrong for us. We need to be under a specialist – even just for the letters/reports needed to gain benefits. Neurology appears the appropriate slot for now.
        RE heart rate monitoring there appears to be little published work. The conceptual paper is the key resource however there is also a paper by Nancy Klimas – I used it way back as a resource to stop GET/rehab. for my daughter in hospital with profound ME/CFS. Bruce Campbell has a website with ideas on it. Dr. Sarah Myhill has rest ideas. Heart rate monitoring must be known to the CDC as Workwell have advised them in the past. The Workwell foundation papers are some of the few published papers on exercise intolerance and ME/CFS . In 1997 Peter White (UK) Randomised Controlled Trial of Graded Exercise in Patients with the Chronic Fatigue Syndrome Author(s): Kathy Y. Fulcher and Peter D. White Source: BMJ: British Medical Journal, Vol. 314, No. 7095 (Jun. 7, 1997), pp. 1647-1652 Published by: BMJ Stable URL: http://www.jstor.org/stable/25174800 . Peter White subsequently abandoned using/reporting on physiological measures. The PACE trial manual for GET (available on the QMUL website) included measuring VO2 max BUT the authors did not gather the data from the therapists. One has to suspect that this is because they knew that the data would not be to their liking.
        The CDC website would benefit from the ICC/CCC table of measurable physiological abnormalities.
        Resting heart rate is standard exercise physiology and given the fact that exertion intolerance if the cardinal symptom of ME/CFS – it behoves the CDC to include some standard health measures that ALL patients can use to monitor their health. The CDC website (from memory- too foggy to check) doesn’t include the stand test for OI (for those able to stand, if unable to stand OI most likely shows up with sitting) another quick and easy test or the Rhomberg test for ataxia…
        I do love the way you have praised the CDC for the good parts of the website.
        Here in Australia people with profound ME/CFS are being refused assistance from the National Disability Insurance Scheme (home care/aids…) on the basis that people recover from the disease. One person ill for 32 years has been refused on this basis. The CDC website points to the disease being short-shortish term but this is at odds with patients lived experience. There is no evidence that anyone “recovers” although the disease may reduce in severity with rest/,management. People are seldom given the tools to enable sufficient rest. Unless a disease is stated to be permanent and lifelong Australian’s are refused NDIS help – the CDC talking in terms of weeks/months and some times years of disability is at odds with patients lived experience and is not backed up by any research that I am aware of. This false picture may benefit the insurance industry but it is not correct and belittles our struggles. We deserve the truth.

        1. Jaime S says:

          Well said, Ali!

        2. Jaime S says:

          Some of my replies seem to be getting shuffled for some reason. Sorry if it appears I called you Ali!

    2. Maschelle Mashburn says:

      I agree with many very important points you’re making. My problem that I keep running into is that my caregiver isn’t allowed to do my shopping or pick up my prescriptions which I desperately need help with because I cannot do it myself. And my caregiver is a family member which I believe should make it a little bit more flexible in what they’re allowed to do. But also caregivers are required to be Hands-On in the program I’m on and the last thing I want is someone pushing pulling and tugging at me or trying to force me to be in the bathtub when I can’t trust myself to be awake because I keep nodding off. And yet these government organizations that make the rules who want things like baths everyday and it just isn’t realistic at all. but they also aren’t supposed to make meals. I need help with that so so badly as I cannot make a meal.

      The only activity that I still do is use the restroom which oftentimes I don’t make it to the restroom and wear a diaper which is just minimally effective, I will put cat food and water for the animals when I’m up to use the bathroom and I grab something liquid to bring back to drink.

      I’m not able to get the government provided free food boxes because I can’t go stand in line and present my ID. I’m unable to sign up for discounts on utilities set up for the elderly and disabled because once again I have to come in in person and I am totally unable to do so.

      I’ve never heard of a reclined wheelchair as mentioned in the previous statement but boy would that ever help me! also there should be help in getting some sort of an adjustable bed for patients who don’t have 24 hour a day care giving I need to be able to get in and out of bed for using the restroom. I can’t get up and down from a Supine position. I had to suffer for a very long time before I was finally able 2 purchase an adjustable bed since my doctor didn’t believe that I actually have that much trouble getting up and down because when I come to appointments I’m able to struggle up and down from the chair that I sit in in the examination room. but the doctor doesn’t even see me trying to walk back down that hallway. She has no idea of how much difficulty I have. and also the need to have things around me within Arm’s Reach from my bed needs to be addressed.

      I am so sick I can’t even recount how many times I have been unable to get up to get fluids on the days my caregiver isn’t working. I have to live on assistance from the state and pre packaged liquids that don’t require refrigeration would be a really great thing to have stocked up by my bedside as well as pre-prepared foods that you can eat right out of the container like a packet of tuna fish and some crackers. But a lot of the prepackaged food items especially beverages are extremely expensive when you must buy them in smaller individual serving sizes. Buying something in a great big bulk size package is both too heavy for me to lift and pour and will go bad once the seal is broken if it is sitting at room temperature. that makes individual serving so important.

      And it’s extremely expensive to have to pay out of pocket 4 things I need to take care of myself in the bed that require cleansing since I’m unable to be in the bathtub. I have to buy all of those things myself. Also a small refrigerator that could be in a bedroom would be absolutely a huge benefit to the bedridden patient.

      The only time I leave the house is for doctor appointments and I am ill before I even make it home and it just gets worse as the p e m does hit later. So having a whole bunch of doctors that I have to go to like specialists is extremely contraindicated in the more seriously ill patients.

      It’s bad enough now that my counselor is trying to find a way to lessen the doctors that I have to see in order to continue to have insurance coverage. And since insurance doesn’t recognize ME/CFS, it isn’t listed on the page of things that doctors look at when they are seeing me during the visit because Insurance gives them the information on what they treat and how to treat it. The doctor’s office looks up the illness that they have diagnosed me with on only that resource. I cannot even get my doctor to look at the CDC recommendations and they also refuse to watch unrest because they said insurance doesn’t cover ME/CFS or even give mention of it in their list of medical conditions.

      of course my insurance is Medicaid because you can’t be a single parent, having been abandoned by their family for refusing to even try to get better and exercise compounded by being ill for 12 years with ME/CFS. That forced me on to the state’s Medicaid system. And they don’t pay for much. So how do I get my Dr to even look at accurate disease related information when they believe that if insurance doesn’t cover it there is no benefit to knowing what your patient is going through?

      It was very horrible to realize that because of insurance my doctor won’t even educate themselves on this illness. And by the way I was diagnosed with the CCC in 2008. And it wasn’t even difficult to meet the required diagnostic criteria and every category. I’m just very disheartening really don’t know which way to turn because the time will come when I won’t be able to get up at all because I’m getting ill after getting up. That makes the activity more then the degree of my illness can tolerate.

      I don’t know what will happen to me then because if I don’t go to the doctor they won’t prescribe my medications that I’m already on to manage symptoms of what I believe are comorbid illnesses like restless leg syndrome and intermittent volatile blood pressure. I also have p a c s and take medication for tachycardia. And I have to see a doctor to refill some of these medications as a couple of them are controlled substances.

      He wrote a very very easy to follow and well worded article and I appreciate it very much. I’m at a point where I probably need a patient advocate since the caregiving program has really all rules that don’t apply to somebody with severe ME/CFS.

      And I also need to know how to help my doctor understand that this could be beneficial to her in dealing with me and maybe identifying other patients that have been misdiagnosed by at least reading the scientific data regardless of whether insurance would cover treatment for it? Because I’m soon to become all alone in this house when my youngest turns 18 and I’m frankly terrified of what direction this illness is going for me because of the doctor appointments I have to keep.

      1. Jaime S says:

        Maschelle,

        I feel you have something very important to say, here! Patients with cognitive issues may have trouble with large blocks of text. I think adding a few more paragraphs to break up what you’re saying will make it more accessible. If you don’t have the energy to do that right now, I’ll go in and add them to your comment later if WordPress will allow.

        [Edit: I added paragraph breaks and I see why you didn’t. A lot of those ideas connected strongly! Hopefully this will make it easier for others to read. I appreciate your perspective, and you have a lot of good ideas for accommodations for severe ME: thank you for taking the time to share with us. Given your severity, I’m sure it cost a lot, and I appreciate the time and energy it took.]

        Jaime

        1. yes, please 😢 If you will edit it for me, I’d be so grateful. ❤️ I’m very exhausted atm. More than typically, and I’m already so debilitated with neuro-cognitive symptoms.. I haven’t been able to read a book in years, and I was an avid reader and own a collection of hundreds of books, including antique books. I just can’t read and write.
          it’s hard communicating.

  6. Adi says:

    The focus on treating symptoms which bothers the patient most is misleading as the symptoms in my experience are like an orchestra that plays together. They all reduce with severe and long term rest and increase with over exertion and or exposure to ME triggers (chemicals, noise, foods etc..). The more exertion the more severe the symptoms and the wider the range of symptoms. The symptom pattern is even slightly different for various triggers. In my opinion to focus on say reducing neurological symptoms implies a disconnect between the various symptoms a bit like trying to get an orchestra to play better by focusing soley on the violins. It seems to me that the focus should be on better rest/activity exposure to triggers management plus reducing the impact of sleep disturbance, pain ..and other symptoms.

    1. Jaime S says:

      Adi,

      I love your metaphor: “The focus on treating symptoms which bothers the patient most is misleading as the symptoms in my experience are like an orchestra that plays together.”

      Thank you for your comment!

  7. Bev says:

    Not one that many like to bring up but it’s one my family fought hard for. I sugfer from moderate ME/CFS. My cousin however, had very severe ME. She was bed bound for many years. Unable to have visitors. It would have been impossible for her to leave the house for medical care, nor is it likely it would have beneficial as she was so intolerant to noise, light, touch etc. My Aunt cared for her in her home. Eventually my cousin passed away. The doctors did not want to put VSME as the cause and my Aunt had to fight for months to get the correct cause. Doctors need to realise that not only do many of us never get better, but it can be so severe as to be life threatening.

    1. Jaime S says:

      Thank you, Bev, and I’m so, so sorry for your loss.

      This is an important omission and I want to thank you for bringing it to our attention.

      Jaime

  8. Amy says:

    For OI diagnosis, the NASA Lean Test should be mentioned. It is the “poor man’s Tilt Table Test” (not to mention much less traumatic than the table.) Just stating that blood pressure should be taken while a patient is standing, after 10 mins supine, is not sufficient. (I had a practitioner take my BP when I stood up, just once, pretty much immediately after I stood up, at which point she shrugged me off and sent me away.) The NASA Lean Test ensures that BP will be taken at *intervals* during an attempt at 10 mins of standing. There should be guidelines or a link to the testt: making sure the patient is supine, still and *quiet* (I had another doc allow me to chat while waiting to stand up…); how the patient is to stand against the wall properly;…of course how to ensure the safety of the patient (I couldn’t make it 10 mins. before having to lie down) and how quite a number of people with OI cannot stand for the test at all.

    1. Jaime S says:

      Thank you Amy, this is an important point.

  9. Dawn says:

    Maybe the CDC can OMIT ENTIRELY REMOVE the following wording that is continually mentioned:

    While vigorous aerobic exercise can be beneficial for many chronic illnesses,

    While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS.

    Just leave it as:

    PATIENTS WITH ME/CFS DO NOT TOLERATE VIGOROUS AEROBIC EXERCISE ROUTINES. STANDARD EXERCISE RECOMMENDATIONFOR HEALTHT PEOPLE CAN BE HARMFUL FOR PATIENTS WITH ME/CFS.

    Take out the following wording from the ME/CFS information all together, as it does not pertain to ME/CFS patients. Since this information is suppose to be about Patients with ME/CFS and not other many chronic illnesses. Less wording makes it simpler to understand.

    So take out the
    While vigorous aerobic exercise can be beneficial for many chronic illnesses,

    and have the CDC put that wording where it would be beneficial to those specific patients with the other many chronic illnesses:

    While vigorous aerobic exercise can be beneficial for many chronic illnesses,

    The CDC should list that information for Patients with specific such as __________ chronic illnesses so that those patient would benefit from vigorous aerobic exercise can be beneficial for many chronic illnesses.

    Thank you for your time and consideration in this matter.

    1. Jaime S says:

      Thank you for commenting, Dawn!

      I see it as a useful compare-contrast statement. It recognizes that an exercise routine recommendations are ‘standard practice’ in many illnesses, but that ME differs. This is a way of validating the clinicians’ previous experience and knowledge while still introducing a new idea, which is an important tool for convincing a potentially skeptical audience. The structure also helps readers feel ‘in the know’ by contrasting uninformed opinion with the scientifically-validated truth that ME patients can’t tolerate and have aberrant responses to exercise. That ‘in the know’ structure further increases the likelihood that ‘no exercise in ME’ will be repeated by word of mouth. It also points to the fact that exercise intolerance and PEM is important to the diagnosis of ME — since exercise IS recommended in other diseases.

      I do understand where you’re coming from, however. Emphasis is still placed on exercise, deconditioning, push-crash, and rehabilitation as a final outcome in several places throughout the site. It is logical to want to yank them all. However, in this particular case, I feel it serves a purpose.

  10. This was such an informative perspective. I totally agree a General Provider can not handle our cases. To validate my concerns, I’ve had a DO refer me out to other specialists, I know they are working on chief complaints, not ME in its entirety. Great presentation by our representatives! I enjoyed the article very much.

    1. Jaime S says:

      Thank you very much, Jacki!

  11. jimells says:

    Unfortunately focusing on the CDC guidelines is attempting to treat the symptom while ignoring the cause of the poor advice: corporate greed and regulatory capture. The medical abuse and social scorn heaped on ME patients will not change until advocates understand that the CDC and NIH are still carrying water for the disability insurers.

    The conflicts of interest between psychobabblers, insurers, and government agencies are well-documented and obvious in the UK. Those same conflicts, involving the same insurance companies and even the same psychiatrists, exist in the US as well, but few pay attention to them because the CDC and NIH have adopted a more effective public relations strategy. As any beekeeper knows, blowing a little smoke can calm a lot of angry bees.

    The ambiguity regarding exercise as treatment and the general confusion surrounding the illness serve the interests of the insurers. As long as there is the slightest bit of “wiggle room” regarding ME then insurers can continue to deny benefits and save themselves literally billions of dollars.

    FOLLOW THE MONEY.

    1. Jaime S says:

      The ‘wiggle room’ must be removed — especially that which discusses rehabilitation, as though many patients return to work after a bit of rest and physical therapy! Those sections in particular can be utilized by health insurance to presume that if individuals follow proper protocol, they can expect to return to work; and that, after paying for such rehabilitative therapies, the insurance company’s work is done.

      There will always be financial interest in the denial of chronic illness.
      The government doesn’t want to pay disability; the insurers don’t want to pay for treatments and more frequent testing; the doctor doesn’t want to listen to the same symptoms over and over without being able to help, and besides: a chronically-ill patient is hard, uphill work. Some clinicians will respond to this feeling of helplessness with anger that they will take out on the patient. All of this financially-based decision-making trickles down into policies and ideas that affect the way the public sees the disease. It’s part of why so many chronic illnesses are viewed in the same, dubious light, not just by the media, but by the majority of those who consider themselves skeptical thinkers: decision-makers agree we’re not worth the time and money, and down the line people think that those decision-makers are experts, and therefore must be right. That we’re not deserving. That we should be ignored.

      Knowing all this doesn’t make me less inclined to dissect the CDC’s website on ME and fight for better representation of the illness.

      Fighting on one front is not mutually exclusive with fighting on others.

      We can push the wheel at CDC and keep pushing the wheel for better treatment options, better testing, better, more specific definitions of the disease. Better funding for research, especially in light of Jenny’s recent blog post about decreased funding from the NIH for ME ( http://occupyme.net/2018/07/30/how-much-will-nih-spend-in-2018/).

      Jimells, I’ve read your posts on science a lot on PR and I trust your logic. If you have an idea for an advocacy project that you haven’t seen anyone pursuing, I’d want to hear it.

      1. jimells says:

        Jaime wrote: “Fighting on one front is not mutually exclusive with fighting on others.”

        Yes, I agree. The CDC website needs to be challenged. The point I failed to make is that challenging CDC and NIH won’t change the Policy of No Research, because CDC and NIH are just “following orders.” Exactly who in the US is controlling policy decisions? We don’t know. It is buried in the muck, and we don’t really have muck rakers any more. Perhaps the legal process of discovery could tell us.

        It is easier to see the network in the UK, probably because it is smaller and the conflicts-of-interest are more blatant. They don’t even try to hide their disdain or their actions. In the US we have pretend sympathy in public while back stabbers buried in massive bureaucracies are sharpening their knives. (The NIH invitation to Shorter, and Nath’s “Team Tired” come to mind.)

        The basic premise of social change is that raising the cost of a policy is what forces policy makers to change the policies. Beating up on CDC and NIH, while necessary, does not change the social (or financial) cost to the insurers. If we were physically able we could use Act Up’s tactics against the insurers.

        The electoral political system is closed to us. Congress has already issued plenty of directives to CDC and NIH, which they studiously ignore. Agency leaders like Collins have so many awards, titles, and accolades that they are untouchable. Since the FIRE Sector (Finance, Insurance, and Real Estate) already owns Congress there is little chance of insurance law reform, or any kind of substantive help from Congress.

        In the UK we have seen that at least a few parts of the judicial system remain independent and capable of making rational and sensible judgments when it comes to releasing trial data. In the US we have seen the tobacco industry finally brought to heel. Although the judicial system largely operates on political expediency it does sometimes make moral decisions. It is an avenue that we need to try. Unfortunately few are interested in that approach.

        Although the federal government exempted itself from the Americans With Disabilities Act, they failed to do the same with the Section 504 of the Rehabilitation Act, which states in part:

        “No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency…”

        This law has been used by parents to force school districts and state agencies to properly fund programs for children with various special needs. I am suggesting that ME patients are disabled and have been systematically denied the benefits of adequate research, accurate physician education, access to treatment, etc, etc.

        It is reasonable to question whether large sums would be better spent on lawyers or on medical investigators. I suggest that in the current environment, even if a miracle cure were discovered tomorrow, few would have access to it, if for no other reason than so few ME sufferers can even get a diagnosis.

        Thirty years of phone calls, letters, lobbying, demonstrations, etc. have had little effect. It’s well past time to take these agencies to court and force them to do their jobs. In the process we can uncover exactly who has been making policy and expose them to the disinfectant of sunshine and public scorn.

        In recent years our fellow sufferers and supporters in the UK have been doing much of the heavy lifting in exposing “one of the biggest medical scandals of the 21st century”. Meanwhile CDC and NIH have been getting a free pass. Their role in the scandal needs to be highlighted. Legal action may be one way to accomplish that.

        So to sum up: Petitioning Congress has failed. Petitioning the Executive has failed. We are incapable of physical demonstrations and confrontations. Let’s sue CDC, NIH, and the insurers.

        1. Jaime S says:

          “The point I failed to make is that challenging CDC and NIH won’t change the Policy of No Research, because CDC and NIH are just “following orders.”

          Ah, I see what you mean. That’s true. What we’re hoping to move here is the knowledge-base and attitude of clinicians, not research funding.

          “The NIH invitation to Shorter, and Nath’s “Team Tired” come to mind.”

          I still can’t imagine what possessed the NIH to invite Shorter to give a talk. It’s not just that he disagrees; he isn’t a scientist, he doesn’t think scientifically, and — there’s no delicate way to put it — he’s made a career out of patient-bashing. ‘Team Tired’ seems more thoughtless to me than malicious: a complete lack of understanding coupled with someone thinking they’re being cute. Important to remember that the NIH is made up of people, all of whom may have different motivations and levels of understanding. None of these organizations are monoliths, even though the up-top decision-making has NOT been in our favor.

          “It is reasonable to question whether large sums would be better spent on lawyers or on medical investigators.”

          I’ve heard similar things said idly, but this is something that deserves more thought.

          “Thirty years of phone calls, letters, lobbying, demonstrations, etc. have had little effect. It’s well past time to take these agencies to court and force them to do their jobs. In the process we can uncover exactly who has been making policy and expose them to the disinfectant of sunshine and public scorn.”

          I think we would encounter just as many obstacles this way — which isn’t to say that you’re not correct, or it’s not something to think about.

          Can I say something frankly? I’ve met many who are under the impression that if the scandal were exposed, people would march in the streets for us. They’d get enraged. They’d fight alongside us.

          The reality I see is that people mostly care about themselves and the people they love. Most people who don’t know a chronically ill person or aren’t one themselves look down on the chronically ill. They believe we’ve done something to earn our position, and they have to believe that to feel safe, so it’s very tough to break through that belief. Even if it’s abundantly clear we’re mistreated, I don’t believe they’ll march: I believe they will tell themselves that there’s a reason we were treated this way, and that reason was legitimate. Call me a cynic.

          We’ve got people who have fought court battles, as you suggest — though nothing as big as suing HHS as a whole. We’ve got people using inside strategies like discussing with the CDC. We’ve got people using outside strategies like protest. We’ve got people educating the public through articles and advocacy. We’ve got people raising money for research, people doing the research, people working on medical education.

          What we *don’t* have is the ability to keep the pressure on, to keep it going 24-7. Because when we engage in one of these efforts, whether ‘outside’ or ‘inside’, we crash. And we don’t always recover. The talents we brought to bear are down for the count; and sometimes those talents are neither interchangeable nor replaceable. You have simply lost that skill from your team, perhaps permanently, after a big project.

          AIDS patients could march indefinitely. Parents of kids with autism could call their representatives every day. It seems the only thing that separates us from other illnesses who have gotten traction faster is consistency, persistence — constant pressure.

          “So to sum up: Petitioning Congress has failed. Petitioning the Executive has failed. We are incapable of physical demonstrations and confrontations.
          Let’s sue CDC, NIH, and the insurers.”

          I maintain a balance between recognizing that the wheel is turning and the needle is moving, and being exasperated and devastated by turns that it is not moving faster. I can’t say that these initiatives are failures. I can’t say #MillionsMissing — which is a physical demonstration — has been a failure because it has not fixed all of our problems. I can’t speak to the merits of the case, because I’m not a lawyer; but I do think you should contact one if you haven’t already. It’s an audacious idea, but that’s what makes it so interesting.

          Jim (Ells?), this has been a really interesting conversation. Please understand if I don’t reply again; it took a lot of energy to write the article and I’ve been kept busy with replies today. If you respond, I will read carefully but I may not have the energy to reply right away.

          Jaime

        2. Patricia K Smith says:

          I agree with this approach. 504 law is a good place to look, I also think we can find redress under civil rights law because there is a lot of discrimination based on sex. It’s time for a class action suit.

  12. Peter says:

    Not read the CDC-pages but the blog. I can for some purposes understand that you try to divide patients in categories. But this is difficult territory and often turns out bad. You will have the totally bedridden, the much homebound and the ones mildly affected, though I can’t really understand if that really is ME-patients? I’m afraid we’re missing the point and the severity that ALL ME-patients experiences, when doing this. And one should not forget that most ME-patients not are totally bedridden at all time. But every ME-patient will be severely impaired cause of the nature and dynamics of the disease. They will have to manage difficult circumstances every single day and reach the “coma”-state, just not every minute and hour. But that doesn’t mean that it is “easy” or mild in any way.I really have a hard time relating to this paragraph. I think it should clearly stress that every ME-patient will have trouble with the tasks listed, not only the so-called homebound and severe. I’m afraid we’re missing out big time on much when categorizing like this and it’s skewing the picture.

    1. Jaime S says:

      Thanks, Peter. There are those who are mildly affected, meaning that they are able to work full time and can even exercise. These people still have limits they can’t pass or they will experience PEM. I’ve spoken to a few patients like this, and they’re hesitant to even say that they have ME.
      They have all the symptoms but they just have them to a far lesser degree than you or me. I want them to be able to access the care they need, too.

      Likewise, there are those so severely impaired that they can’t communicate and need parenteral nutrition. We want to make sure that the description of the disease includes them.

      The purpose of the division is an attempt to make sure, to the best of our ability, that everyone’s voices are heard. Without some mental ‘partitioning’ it’s hard to see who’s invited to the table, and who is yet to have a seat.

      Let me know if I’ve misinterpreted what you’re getting at, here. I’m open to listening to more!

      1. Peter says:

        First: I do find it a bit odd if ME-patients, even so-called mildly affected can hold full time work and even exercise. That is astonishing actually, but nevertheless very good.

        Then I think I’m misinterpreted if thinking I would exclude anyone. My point is exactly the opposite!

        In which other disease do we grade it the same way? Severe cancer, moderate or even mild? When it comes to dividing like that, my point and fear is that you will get a picture by the medical community and others, that you have some patients that are very ill and a whole lot of patients that are quite fine. That is not the reality, and a very scary picture. I think much of the text on dividing and examples used are very inappropriate.

        I appreciate all the hard work done. Webpages are better and improved, but still a lot to do. We do know a whole lot, which is good confronting the myth of “we know nothing”, but I find much quite “categoric” and easy. I don’t know how helpful that is to all ME-patients, especially the so-called moderate and mild. Sorry if sounding negative, but getting across on this dividing-thing is so important.

        1. Jaime S says:

          Thank you for clarifying, Peter! That helps.

          I have literally met or heard the story of fewer patients than I can count on one hand who can purposely exercise, and I’ve spoken with hundreds. I can work full-time (barely) and with lots of accommodations (I mostly work from home, though I often go to in-person meetings). So I view it as ‘rare but possible’.

          I agree that ‘mild’ ME is a dark joke. Mild patients still have debilitating symptoms every second of every day. For whatever reason — the right pacing, the right meds, genetic advantage — they’re able to struggle through. Their quality of life is still low.

          I think the only reason we categorize this is the same reason we categorize anything: it helps us know how to react and what to provide. For example, as a ‘mild’ patient, I need very different accommodations than a moderate or a severe patient would.

          Cancer may not be called minor, moderate, or severe; but it is called Stage I, Stage II, and Stage III — because cancer is always progressive until you begin to recover.

          Perhaps MS is a better example since those patient, too, can be better and worse at different times. They classify the patient as relapsing-remitting or progressive. For relapsing-remitting, you could say a slightly better-off patient is remitting when they are doing better, and in a ‘relapse’ when their symptom presentation is more severe.

          I’ve discussed the use of this terminology with people with ME before, but some are under the mistaken impression that ‘remitting’ means ‘temporarily cured’.

          Your tone is absolutely not offensive or overly negative, Peter! I see your point and I wish that we could shift that terminology so that people understand even a ‘minor’ patient is living a very different life than the one they had before they were sick; that if you asked me to circle symptoms on CCC it would be a field of red, despite that I walk and talk and smile and present as a healthy person to those who don’t know me.

          I see it as a matter of expedience, showing doctors that different patients may need different kinds of help. But I do think that we’re missing out on discussing the people “at either end” — both the most severely affected and the minor patients… and I think people have mostly forgotten the latter in their criticisms. I appreciate you bringing this up.

          Jaime

    2. seesir says:

      Thanks Peter, these points are so very important.

  13. LM says:

    I think there needs to be more stress on the fact that PEM can be caused not just by physical exertion but by mental and other non-aerobic tasks. Some can’t even follow a TV program and if they focus and try they can bring on PEM. Certainly, a high school student needing to pay attention in class or studying for a test can bring on PEM. Or a mother who, perhaps mildly impacted by ME/CFS, needs to rush to the ER for her child and now not only has the mental pressure of an ER situation but has to process discussions with the medical staff and coordinate care for the child once home. That is an extremely difficult physical and mental situation on any parent but a horrific ordeal for an ME/CFS sufferer. Now with PEM, the aftercare for the child becomes a most impossible task for that mother. The mental strain in of itself would be crushing and the PEM would be without letup.

    I have always been concerned with the advice to monitor the heart rate to keep from bringing on PEM. It really does not take into consideration our inability to monitor our mental functions that are impacting our disease processes that lead to PEM. Does walking outside with all its visual and audio activity that the brain processes really correlate to walking on a treadmill staring at a white wall and controlling the environment to get an aerobic measurement? For me, PEM can occur if I had to do something physical that is not aerobic, like my muscles having to contract for the back and forth movement to push my little toy-like vacuum cleaner. Or opening delivery boxes and bending over to get them out of the box and put them away. How about brushing teeth? I get tired and have several hours of lying down and getting up from just that. The muscles have their own thresholds that have nothing to do with the heart rate. I know you have “muscle fatigability and fasciculations” section, but I don’t think there is enough information here. Will a doctor really understand a patient going into PEM by brushing their teeth?

    There really cannot be enough said about how exercise is not a treatment for the disease and patients should not be encouraged to increase their exercise because of deconditioning. I don’t think you have stressed this enough in the “Recommendations Changes” and this should be expanded. But there is never much said about how PEM is impacted by mental and other non-aerobic activity. I know PEM being brought on by cognitive tasks is briefly mentioned by the CDC, but it really needs more information, possibly real-life scenarios outlined.

    And right now, I am really, really wiped out from writing this. I hope it makes sense.

    1. jimells says:

      LM, yes your post makes sense.

      I, too, have found that emotional activity can be as bad or worse than any physical activity. Fighting with lawyers, doctors, and government gatekeepers is at the top of my list. In some ways it is a relief to live in complete social isolation: I no longer have any strength to deal with “family drama” in any form.

      You wrote, “Will a doctor really understand a patient going into PEM by brushing their teeth? ” No. Before we get to the clinic the doctor has already made up their mind that we just need anti-depressants and a psychiatrist.

      CDC’s lame campaign to inform doctors about ME is useless by design. Just imagine if they ran half as many TV ads for ME as they do for vaccines. The phrase “deliberate indifference” comes to mind.

    2. Jaime S says:

      “I think there needs to be more stress on the fact that PEM can be caused not just by physical exertion but by mental and other non-aerobic tasks. ”

      Very good point, LM. It needs more emphasis, especially because it’s something that the ordinary public won’t consider “an exertion”.

      “Does walking outside with all its visual and audio activity that the brain processes really correlate to walking on a treadmill staring at a white wall and controlling the environment to get an aerobic measurement?”

      This is the first time I’ve ever heard this perspective and it’s incredibly valuable.

      Everything you’ve said makes sense, and a couple of the ideas you’ve brought up are quite unique. I know you sacrificed to write your reply, so thank you *very* much.

      Jaime

      1. LM says:

        Thank you.

        And, you can never control the environment outside.

        Case in point. That time I and my friend went to a nice quiet place for a stroll at a beautifully manicured graveyard. Except it was Veteran’s Day. A group of men began playing their band instruments. Tubas, horns, and drums.

          1. Amy says:

            Thank you LM, and Jaime. I am almost a different person inside my home than I am outside, even just on the street in front. At home and on my private property I can walk around quite a bit, do yoga (even standing poses). I can exercise at home but can only do it outside if it’s dark (night), cool and empty. Sensory exertion–sounds, sights, movement around me–is as tiring as physical exertion for me. The mental work of taking in the world around me is almost too much. A graveyard is a great example! I think the only “trip” I’ve taken on my own was to visit my father’s grave a couple cities away. I realized I could drive there and back–that wasn’t the hard part–but it also wouldn’t be hard once I got there. Cool day, not too sunny out, no one around (NOT Veterans’ Day) and my dad wouldn’t mind if I didn’t stay long 🙂 Funerals are pretty easy public events too. Wear dark glasses, wide-brim hat like blinders, earplugs subtly in, look down…everyone just thinks you’re sad, when you are perhaps more sick and tired than sad.

            On the subject of deconditioning. I think it’s a given that we will get deconditioned so the focus should be on not getting *further* deconditioned if possible. I’m sure I’m repeating what someone else has already said here when I say that we should be working on NOT GETTING WORSE, rather than on getting better and rather than being rehabbed. I know that we are supposed to try to get better, and we want to, but in the absence of current treatments, there needs to be an understanding from med professionals that not getting worse is the most realistic goal for a lot of people. I was in great shape when I got sick, continued to work out because I could, but even I became deconditioned because I couldn’t do near the movement I did pre-illness. “Deconditioned” is a relative term: For me I am very deconditioned. For someone else–heck, even some healthy people–I’m in pretty good shape. If I ever recover enough, I will have to work on reconditioning myself to return to my normal functioning; that shouldn’t be an immediate goal by any means. I’m sorry I’ve forgotten what section of the CDC Guidelines this falls in, but we should try to remove the “wiggle room,” as someone called it earlier, that serves the (financial) interests of agencies and insurers, rather than patients and carers.

  14. LM says:

    I don’t know if the CDC mentions that other medical conditions can impact ME/CFS and drive the disease process. Or vice-versa. Let’s face it, outside of patient reporting we don’t know anything for certain because there is no research. But it is worth mentioning a chronic illness like ME/CFS no doubt impacts COPD, diabetes, hypothyroid, Fibromyalgia, HIV AIDS, and that these chronic illnesses would impact ME/CFS. Maybe this should be a no-brainer, but relying on it as should being a no-brainer does not mean the NP that works for my Rheumatologist will know this without being specifically fed that information.

    Also, I think my fibromyalgia drug Gabapentin makes my ME/CFS worse. Yet, I will never have sleep cycles without it as I had “black sleep” for years and years until I began using it. My Rheumatologist asks every 6 months if I want to raise my Gaba and I tell him that whenever I have done this my brain feels like it is being crushed and begins to burn. He seems perplexed. Afterall, I am only on half the dosage (300mg. 4x a day) that one can be on.

    I don’t mean just not having success with a drug (like the many sleep medications prescribed which only knocked me out or drug after drug for the depression I never had) or have bad reactions to (a half dozen for various health issues) but drugs that I have success with for other health issues that I believe are impacting my ME/CFS negatively but no one but me realizes it because I always get a little weaker and tired and PEM comes on more easily. Like Levothyroxine and Hydroxychloroquine. My doctor seemed so disappointed that resolving my thyroid numbers with medication did not make me “better” and commented how I was not responding like the rest of his patients. But you see, he doesn’t understand his other patients only have fibromyalgia and/or hypotension and not ME/CFS too.

    1. Jaime S says:

      “Maybe this should be a no-brainer, but relying on it as should being a no-brainer does not mean the NP that works for my Rheumatologist will know this without being specifically fed that information.”

      Sad but true.

      We do have some evidence for increased prevalence of: orthostatic intolerance; fibromyalgia; Ehlers-Danlos Syndrome / hypermobility disorders. We have evidence of earlier death via cancer, but not necessarily increased prevalence of cancer. At the least, this argues for yearly testing for cancer, with or without family history.

      It’s a serious risk in any chronic disease that new symptoms will be mistaken for some expression of the disease; that all symptoms are due to the disease. It’s lazy thinking, but we’re all prone to it. It’s in this way that major, treatable diseases go untreated and may cause or contribute to the death of the patient.

      “I think my fibromyalgia drug Gabapentin makes my ME/CFS worse…
      Hydroxychloroquine…”

      I fear at some point the clinician’s (and patient’s!) mind begins to buckle under the complexity. Re: quinolones and quinolines: https://www.s4me.info/threads/me-association-dr-shepherd-provides-an-update-on-antibiotic-use-in-m-e-and-highlights-concerns-about-quinolones-and-fluroquinolones.5140 .

      I’m sitting here sighing and shaking my head, because there is just not enough research. What we can say to clinicians is the “start low and go slow” (which the site does advise, though they don’t quite use the rhyming phrase), and “ME patients often have paradoxical reactions to medications”
      (which they also say). I don’t know we are at a place where we can advise them in regards to specific drugs and their effect on pwme.

      We can, however, remind clinicians that it’s possible for a patient to have more than one disease at a time!

    2. Patricia K Smith says:

      Just wondering if you have had any success with indica cannabis for sleep.

  15. Paul Norman says:

    One important item I feel is missing in your arguments regarding misleading information about ME by the CDC (also missing by ME Action in general) is the affect that the information may have on ME sufferers obtaining federal disability benefits from the Social Security Administration. Anyone who has gone through the process knows that it takes two denials & two appeals to get to the final decision (usually a 2-5 year process depending on the State) via judicial hearing. If you are fortunate enough to get a judge who doesn’t deny benefits for any condition without a “black or white, positive or negative” diagnostic test, that judge is often self-educated or seeks current information about ME through federal government sites, mainly the CDC. I would just ask that you also consider & document administrative law judges as an incredibly important recipient of information published by the CDC. I would also like ME Action to consider the desperate help needed by so many sufferers of ME in navigating the federal disability benefits system through the Social Security Administration. You all have the platform to educate, assist, and quite possibly increase the approval percentages for those of us who are mired in the process. Thanks so much for everything you all do for the ME community, it is very much appreciated!

    1. Jaime S says:

      You’re absolutely right, Norman, and this is so important. Thanks for bringing that to the forefront.

    2. Ben HsuBorger says:

      Paul,

      Thanks for pointing out the important connection between CDC information and SSA Administrative Law Judge education. I tangled with the new SSA representative (Michael Goldstein) at the latest CFSAC meeting in June about this issue of miseducation and the unwillingness of the agency to be open about their process for making decision and training ALJs on this disease. The engagement with the SSA at this meeting was one of the most frustrating aspects of these 2 day meetings. You can hear the audio from this here (1 hour and 13 minutes in is when I raise my questions/concerns): https://www.hhs.gov/sites/default/files/lg/2018-06-20-cfsac-meeting-audio-day-1.mp3

      The complete transcript from CFSAC is also here:
      https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2018-06-20/transcripts-day-1.html

      I’d love to speak with you more sometime about how we can continue to best put pressure on SSA and confront the most problematic aspects of the current system. You can reach out to me at:
      ben [at ] meaction [dot] net

    3. Jaime S says:

      Paul,

      I wanted to add that #MEAction has a patient portal that does have documents about applying for social security / disability. You can find that here: https://www.meaction.net/patients/

      Scroll down to ‘Disability and Assistance’.

  16. LM says:

    Also, a big problem with a Primary Care Provider (PC) coordinating care is that the Social Security Administration (SSA) will not allow a PC to submit SSA disability paperwork. Only specialists can complete the SSA’s disability paperwork. The PC can submit tests but only if they have been reviewed by a specialist and the specialist’s opinion or diagnosis is included.

    1. Jaime S says:

      That’s a fundamental obstacle! Thank you for bringing it up.

  17. Liz says:

    Thank you for sharing this. You are doing such great work. I strongly disagree and strongly agree with different parts of this.

    1. [Strongly agree must be changed] “Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure for ME/CFS.”

    Doctors will go right to this “carefully increasing exercise to avoid deconditioning.” It implies progress is linear, when it is not. It also assumes all patients are attune with their exact bodily needs.

    It could read instead: “Have your patient use a heart rate monitor. On mornings where the monitor shows there is an X% increase in heart rate, the patient should pull back their level of activity. They should also use a monitor to avoid elevating their heartrate to anerobic levels. Mild-to-moderate patients may find light activity to be helpful, including stretching, short walks, and restorative yoga. Patients should stop activity when they feel strain.”

    2. [Strongly disagree] “But there is no evidence that early intervention affects the likelihood of full recovery.”

    We need early intervention. That you are fighting against this is disappointing.

    3. [Strongly disagree] I strongly disagree with your plea to remove talks of recovery. While this may be strategic, and beneficial for long-term ill patients for insurance purposes, it is a huge blow and suggests there is nothing that can be done. You can suggest added clauses about disability insurance, but not at this cost.

    4. [Strongly disagree] Emotional and physical traumas can be triggers, and they should keep this line. I know someone who got ME/CFS after being violently attacked and having head surgery. ME/CFS is associated with stress on the central nervous system, emotions can be a cause of stress.

    1. Jaime S says:

      “Doctors will go right to this “carefully increasing exercise to avoid deconditioning.” It implies progress is linear, when it is not. It also assumes all patients are attune with their exact bodily needs.”

      Yessss. Learning how to pace takes enormous self-awareness, and that can take ages to hone. I remember at one point I was contributing to a thread regarding how to know you’re beginning to overdo it and codifying it in print made me realize how complex it all is: https://forums.phoenixrising.me/index.php?threads/increasing-aerobic-workout-i-crash-after-15-mins-but-want-to-gradually-increase.37777/page-2#post-601390

      “It could read instead: “Have your patient use a heart rate monitor. On mornings where the monitor shows there is an X% increase in heart rate, the patient should pull back their level of activity. They should also use a monitor to avoid elevating their heartrate to anerobic levels. Mild-to-moderate patients may find light activity to be helpful, including stretching, short walks, and restorative yoga. Patients should stop activity when they feel strain.”

      Understandable and logical, but certainly many patients would worry that any exercise rec can be read or interpreted more hopefully by the clinician than warranted. As I’ve said to others, there is a paucity on HR monitor use in ME in peer-reviewed literature. It might be worth recommending anyway, since it’s an incredibly low-risk intervention. Hard to *object* to it on any grounds, if you see what I mean?

      “2. [Strongly disagree] “But there is no evidence that early intervention affects the likelihood of full recovery.”

      We need early intervention. That you are fighting against this is disappointing.”

      Not fighting against early intervention by any means — fighting against the idea that patients will recover as a rule.

      “3. [Strongly disagree] I strongly disagree with your plea to remove talks of recovery. While this may be strategic, and beneficial for long-term ill patients for insurance purposes, it is a huge blow and suggests there is nothing that can be done. You can suggest added clauses about disability insurance, but not at this cost.”

      Ah, but you disagree here, too? I see your point of view here, and I respect it.

      Here’s the thing: there are plenty of diseases that are forever, that people don’t actually recover from no matter what. But that doesn’t mean the situation is ‘hopeless’ — because these diseases have treatments that make life easier to live. A lack of complete recovery is not a lack of hope — I hope.

      “4. [Strongly disagree] Emotional and physical traumas can be triggers, and they should keep this line. I know someone who got ME/CFS after being violently attacked and having head surgery. ME/CFS is associated with stress on the central nervous system, emotions can be a cause of stress.”

      I’d argue that the head surgery is just as likely to be the culprit. I know someone else who developed ME after minor brain surgery.

      The issue is that emotional stressors increase all-cause mortality. There is evidence that emotional trauma renders one susceptible to nearly every disease on the planet. Cancer is a good example. There are many studies that say that emotional trauma renders one more susceptible to cancer; but I doubt it would be on the CDC’s page about cancer.

      Thank you very, very much for your detailed analysis, Liz! Even though we don’t agree on every aspect, I definitely see each of the points you’re making as logical and worth more consideration.

      Jaime

  18. LM says:

    Another point about SSI/SSD, if a patient is filing then he or she needs to be seeing a SPECIALIST every 6 weeks. Yup. And that can go on for years. And IF a patient finally wins then he or she will have to see a SPECIALIST every 6 weeks until their retirement age (mine is 66) and every three years they will send a form for the patient to complete with their last 3 doctor visits and the patient MIGHT get a thorough review. How are some ME/CFS patients suppose to get to all these doctors and to their lawyer and go through testing to give evidence they are not functionally able to work? I know I was barely able to do all of it but somehow I did.

    Also, practically no one is disabled under SSI/SSD for a disease, illness, or condition. It is the SPECIALIST or two that goes to bat for a patient and completes the paperwork making the case that the patient is not functionally able to perform any type of work. Now, if there happen to be functional tests that would make sense for the patient to go through (I had to go through cognition testing) then SSA will have the patient go through the testing at a cost to SSA.

    Once again, I hope all this makes sense.

    1. Jaime S says:

      It definitely does, thank you.

  19. Annette Whittemore says:

    I would add immunologists and infectious disease doctors to the team of specialists required for those with ME. Chronic infections and poor immunity require appropriate treatments that are rarely addressed by general practitioners.
    Information on ME should also address the different types of disease stages. There are those who experience relapses and remissions and those who are progressive from day one. Others start out with relapses and remissions but then become progressively and steadily worse. Just like MS, knowledge of the type or stage of ME might help to determine the best treatment.
    Diagnostics should include in-depth infectious, endocrine and immunological testing. These deficits, like disordered sleep, can and should be addressed.
    It is important to be honest with patients by presenting them with realistic expectations. This is a life long disease. Individuals deserve to be encouraged but also taught to cope with a very serious, life long illness. Again, like MS, some people will have mild disease, some moderate and some will experience a more severe illness. Patients deserve to be told the truth.
    Finally, when I read web MD, or the CDC’s limited disease descriptions, I wonder where they get their information from because I don’t recognize this simplistic Illness. This is not the ME that I have known and dealt with for the past 30 years.

    1. Jaime S says:

      Thank you very much, Annette, this is valuable input.

  20. Simas says:

    Great job!

    “‘Push-crash cycles’ imply the patient is responsible for their own debility, when in fact crashes are often caused by stimuli entirely outside of the patient’s control. While avoiding deconditioning is desirable where possible, the emphasis on deconditioning devalues patients’ reality: that they are inactive due to necessity, not due to the lack of skilled physical therapy.”

    I would maybe add here that not only crashes can be caused by non-physical stimuli, but the physical stimuli needed may be extremely low, like going to the bathroom, or for a milder patient – going to the shop. Such activities are essential for an independent living and the patient can’t really choose whether to do them or not, unless they have a good support system and very often they don’t..

    1. Jaime S says:

      Thank you, Simas. This is definitely the case.

  21. Jeff says:

    CDC: “Caution is warranted in prescribing stimulants for cognitive problems. Mild stimulants may be helpful for some patients”

    Where is the evidence that stimulants can help some ME/CFS patients? Has there been a single study with a statistically significant benefit?

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