First of all, thank you so much to everyone who responded to the #MEAction survey to make our response to the NIH as comprehensive and representative as possible!
On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A wide variety of patients, scientists, advocates and organizations formulated and sent their responses. #MEAction releasing a survey in which over 1800 stakeholders participated. It can be found here. #MEAction also took the opportunity to gauge patient responses to a variety of important issues, and to gather demographic and other important data.
These are the results.
A survey was created through Google surveys by #MEAction containing 109 questions allowing respondents to rate the importance of each item 1-5, in which items marked ‘1’ are least important to research and items marked ‘5’ are most important to research. The survey provided a neutral summary of the potential significance of each item, and respondents were encouraged to skip items they did not feel they understood rather than choose an ‘average’ value. An item that rated 4/5 or better was considered to be of significant concern. The survey also contained 13 questions about demographics and open-ended responses for each section, allowing respondents to add additional comments and concerns.
Responses were solicited through meaction.net via its news platform, the online community Phoenix Rising, and the social media outlets Facebook and Twitter.
Items were added to the survey at the request of community members, and respondents had the option to skip items they did not understand, which creates some heterogeneity in the number of responses per item.
Survey questions were divided up into the following categories:
- Specific challenges to research
- Specific solutions to these challenges
- Pathogenic Triggers
- Non-pathogenic Triggers
- Additional avenues for research
Data was gathered anonymously, marked only with time completed. Data was scrubbed to eliminate accidental double-submissions and to more accurately calculate numerical values, e.g. if a respondent wrote that they contracted ME in “1998 or 1999” the figure 1998.5 was substituted in order to estimate average time of onset for all respondents.
Respondents self-identified as 92% white, 82% female, and were generally of European descent.
Limitations of the survey include that it was only provided in English, the limited period of time allotted to respond, which may have preferentially selected for retired or disabled respondents. The act of completing a 100+-question survey may have been untenable for severe and very severe patients. Here ‘severe’ is defined as househound, and ‘very severe’ is defined as bedbound. This creates the possibility that respondents are generally healthier than the referent population.
In order to gather information from individuals with a variety of perspectives, clinicians and caregivers were also encouraged to respond.
Specific Challenges / Barriers and Potential Solutions in ME Research
The greatest barriers to research in ME and potential solutions are rated in the figures below.
“Lack of money and stigma/poor understanding are intimately related. They create a feedback loop with lack of researchers and lack of good information. Until we push money at this in a big way, along with good information, these barriers will remain.”
“NIH needs to recognize that fishing expeditions are needed, and that well-posed single hypothesis/single outcome studies are not the only ones needed to advance ME/CFS research.”
“Because this disease has been sorely neglected for 30 years, the ME community knows more about it than the scientific community as a whole, and NIH in particular. You need to work with specialists OUTSIDE NIH, researchers such as Ron Davis at Stanford, clinician/researchers such as Dan Peterson of Incline Village, Jose Montoya of Stanford, and John Chia in L.A. You need to work with patients who have a scholarly background. Finally, there has been a CFS Advisory Committee to HHS since 2003 (before that there was a CFS Coordinating Committee). The public members on CFSAC have worked hard to produce a set of recommendations every year, and every year it has been ignored. It would be a good first start to take those recommendations seriously.”
Research Definitions and Name of the Illness
The #MEAction survey revealed that patients overwhelmingly prefer the Canadian Consensus Criteria (CCC) definition of myalgic encephalomyelitis (62%) or the International Consensus Criteria (ICC) (45%) over other proposed criteria, including the IOM’s SEID, Ramsay’s criteria, Fukuda and Oxford. The Fukuda and Oxford criteria were considered the least favorable criteria by respondents, at 12% and 11% approval rates, respectively.
Approximately 30% of respondents agreed that patients should meet multiple different criteria; however, respondents considered it extremely important that NIH studies use one, consistent definition in clinical trials (4.45 / 5). This reflects the idea that, while multiple definitions may be useful clinically, research definitions should be more stringent and consistent, so that it is clear which illness is being studied, and to what patient population data may apply.
Although the study of subtypes, clusters, and the differentiation between ME and CFS definitions was not listed as a potential research priority on the survey, enough individual comments reflected this concern that a discussion of ME subgroups emerged as a theme:
- The presence of multiple subgroups with symptom-clustering in ME
- That ME and CFS are not the same illness, and should be studied separately
- Early-onset and chronic patients should not be placed in the same cohorts (vis a vis Lipkin and Hornig’s cytokine studies)
“The fact that M.E. appears to me to be an umbrella title for half a dozen sub groups means that history of the symptoms is critical. What caused one type of M.E. would not be responsible for all sub groups so research results should be split to show which sub group responded best to which treatment. My M.E. differs from others that I know so it is important to know what results are relevant to which sub group.”
“…we should NOT hold this disease to a higher standard than all others by hunting for one, elusive biomarker or by insisting that results that are frequently abnormal and may be sensitive but not specific are useless. We could probably get very close to diagnosis with panel of 3-5 commercially available tests: e.g., natural killer cell function (properly prepared and executed), sed rate, cognitive testing and where available, an exercise test. It’s also very important that patients be tested for individual pathogens to help determine what antivirals/antibiotics, etc. may be of some benefit to them.”
Click here to read part 2 of 3, and thank you again for making it possible for your community to send such a data-driven message to the NIH!
5 thoughts on “#MEAction RFI Poll Report (Part 1 of 3)”
It is encouraging, after all these years, to see that our disease is finally getting some attention. However, what concerns me is the “politics” will get in the way. There was a big discussion about the new name, SEID. Now I see that people are concerned that ME and CFS aren’t the same disease. There have been many times over the past 12 years that I have gotten frustrated with the “little things” people argue over. I wish we could just move past what we call our disease and find the cause, a variety of treatments, and maybe even a cure.
The report says that some don’t believe ME and CFS are the same disease. When I was first diagnosed I was told I had Epstein/Barr. My primary gave me the diagnosis and told me it was also known as Chronic Fatigue Syndrome. He believed the two were the same thing. That was in 2006. I had been diagnosed with Fibromyalgia 2 years earlier. Nowhere in my medical history did it say I had CFS even though the visit notes detailed how I was advised on CFS. It took 5 years to correct my records and the only reason I bothered was because I didn’t want to lose my SSD.
There are any number of other diseases that have multiple sub-groups yet are still categorized under the same disease. Why change this for ME/CFS? For insurance? That will just muddy the picture even further. Again, can’t we concentrate on what the disease is rather than what we call it?
I understand your stance on this Joanne, and up until I began going through research for the RFI, all I knew was that some found the name ‘CFS’ deeply offensive. While I could understand that on a surface level, and agreed that ‘CFS’ sounded dismissive, I did not view it as a central issue. (I thought, “what difference can it really make?”) Now that I’ve done the research for the RFI, I don’t feel the same. Jason et al. in particular found that physicians who read ‘CFS’ instead of ‘ME’ had different views of the illness, even when presented with case studies of patients with identical symptoms. As editor, I get Google alerts for both ‘CFS’ and ‘ME’ and you’d be taken aback by the difference in tone between the articles that tend to use ‘CFS’ versus those that use ‘ME’. I wrote a rather long note on this at one point on PR, and someone asked if I planned to make it into an article. If so, it’d be an opinion piece. Keep your eye out for it; the research may change your mind as it changed mine.
Or not — and that’s okay, too. I have my stance, but I respect the stance of others in this matter. Moreover, it’s one of those issues that affects different countries differently. Context matters.
I know what you mean about getting frustrated: reasoned, evidence-based debate is very useful. At the same time, it’s vital to remember for what — and for whom — we fight. To keep it clean, and be willing to compromise when compromise is sensible.
I totally agree with Joanne,
Its more than obvious that this desease has thesame underlaying cause, if anyone take their time to read and do a bid of Research of the many findings of doctors and scientistics they will see that the biomarkers the basic of the illness are thesame, Everything start From the Our Body been supresed by something, been alteres by something that couse a myrad of Body disfuntion, were the Body funtions to cover all the ensentials enzims and metabolism esential to mantain the proper funtions of the immune system, the gut but mainly the celular funtions are Impared block transformed by this adquire underlaying cause. The viral part like EBV , CMV ,HHV6… Are just triggers thats will result in the severity of the Me/CFS ..but if You see Me/CFS have not just the mitochondrial energy disfuntion , You also see through Out the years this persons suffer From lupus, with high rates of cáncers ,artritis , neurological problems, gut leak,inflamation in general,immune disfuntion, EACH of this desorder or conditions will be associated to how Many viruses or bacterial each individual is exposed , thats will determ the severity of symptoms, what You guys call subgroups , but its thesame illness, like Many times this illness its been compare to AIDS , for the similarity And severity of Imparedments and the Bodys immune disfuntion allowing viruses, bacterias, Cancer cells to progress to replicate in the Body the supresed ratio cells and killer cells on ME/CFS, is idéntical to the one ON AIDS.. Thats why viruses enter so easy, replicate, reactivate pass to organs, to central nervious system, read HHV6,CMV,EBV .. Cause no harm on healthy immune individuals ,, its publícate All over they only cause serios harm on individuals with Impared or compromise immune system , thats why CMV,EBV,HHV6 also been often associated with the progresión From HIV TO AIDS…thats why subgroups not All AIDS patients have thesame severity of symptoms thats why some are at higher risk to die than others. Same thing in Our illness.
We need to find the ROOT cause of this.
The main focus on of Research has to be virologic, You can address pneumonia, or cancer or any inffection on an AIDS patient, but if You dont address the ROOT cause with retroviral theraphy, the inffections and Cáncers will come back the Body is subsectible weak.
I made a comment Last night that was not published, maybe i did not used the proper words.
What i ment to say was that this desease it is been neglected for 3 decades, even now still neglected , You still seen alot of obgections,You still see lack of urgency, after 3 decades and millions of Americans and around the world suffering this should have a sense of urgency, should be a priority to the NIH, to CDC.. This is not the fire power that Collins said they were going to put to crack this desease and the root cause, they goverment know for many years this is a desease were the immune system is impaired dusfuntional killer cells, suppressor cells, helper cells, this is been proposed researched in out own soil by many doctors and scientists, it’s been proposed many times for the similarity of this desease with HIV/AIDS , that the underlaying cause of this desease it could be a retrovirus, evidence of reverse transcriptase in patients have been found by different virologist and I’m not taking just about XMRV, and mikovits that’s it’s one in many of the conspiracy theories that’s been around every time it comes to light that this could be caused by a RETROVITUS , this not about mikovits committing illegal actions or about a contaminated test, this is about findings of reversed transcriptance of retroviruses like you see on HIV/AIDS, is about isolating sequences of retroviruses, and none of this have been deeply studie by our GOVERMENT health institutions, it’s been the opposite , from long time ago they know this is immune disfuntion, they didn’t need any findings in another country to realize the problem is in the immune system.
The goverment don’t want to go deep on this and much less to see that the possible underlaying cause of this could be a transmisible infectious desease, that cause all this body immune disfuntions.
That’s why they still doing trials so small, not allowing outsiders or other Researchers to enter the studie, thats why 1 year after the admitíon of collins of the desease and the promise of All fire Power to crack this sooo call mistery, we still don’t have a mayor. Budget in founding like most of cronic illness does.
Everything seems to be just politics, there is more people with CFS than AIDS and the don’t have even 5% of the money they receive for research.
It’s like if finding the cause of our illness is a national security top secret issue.
What Jaime and alfred just said make alot of sense.
I had a relation about 10 years ago, this relation when alone for a few years, little after the relation was over, this person told me she was diagnosed with FIBROMYLAGIA, couple years later she told me she was diagnosed with Me/CFS, she said to be having lots of neurological, cardiovascular and other myrad of problems, beside the fact that i felt bad for her, i didnt find this to be concerning at all to me or to my health, they were just what seem to me normal stuff that happen.
But she never mentioned immune system, but even through it didnt seem to be something transmisible my concerns grew up every Day passed, to the Point i reach Out to my doctor and order all kind of blood test including HIV , everythin come back negative, them i said to myself its neurological nothing is positive , nothing to worry about.
A few years passed, everything seem to be good, until one Day, that Day 2 years ago i started to have all same symptoms that this person i was with Many years ago Had, náusea ,dizzines , Shorteness of breath, problems to sleep, spread pain, twiching, no energy at all, strange sensations, memory issues, cognitive issues, bowel issues, etc.
I found this Very strange and no coinsidence.
Them i when to see a group of Very knowledgeble doctors in Me/CFS were end up diagnosted with Me/CFS ,they did a Very complete test of my immune system, everything come back disfuntional , my NK cells were Very low, my lymphosites were Very low levels, every Cell and enzme in my Body was desregulated, my immune extremely over active ,my immune looked Very much like a person with AIDS,they also did a test tha showed a past EBV virus was reactivatiing,coxackie was also active at that moment.
When all this happen, i contacted this person to see how it was doing , to tell what was happening to me, to my surprice this person was in a relation with some and that person Very recently started to feel same symptoms that totally indicated onset of Me/CFS ..
This is a clear evidence that suggest that the underlaying cause of this illness has to be something transmisible thats i adquired from her, something that has been debilitatiing my immune system to a degree, were All this viruses started to reactivate and replicate in my Body.
I started digging and found Many cases like mine, Its more than evident that this is not a phsycological desease, why the goverment has for so Many years ignored all this facts, why they dont do thesame thing they did with HIV /AIDS,it seems like if finding that root cause of this desease is a matter of national Security or something.
Becouse to treat this desease as phsycological , when the presentation of this desease it has show to be epidemic, with outbrakes in different cities around united states, outbrakes like , ebola, sika,cólera ,hiv,etc ..has always been treated as infectious, transimisable, epidemic.
Even today when the goverment has admitted in public , that this desease is cronic and debastaring, full of immune disfuntions, knowing the only other desease that Its comparable in severity, imparedments, morbidity, mortality, high rates of viruses cáncers infections is AIDS, they still putting obgections instead of treating this desease as posibly epidemic, possible transmisible, posibly infectious, urgency urgency…they keep treating it like lets find cure for this people that are tire can some one give me suggestions? Can some one give me a hint couse We dont know what this is about .
PLEASE WE ALREADY HAD ENOUGH OF THAT, WE ARE ALL SEEN WHATS REALY GOING ON!! WHAT WE NEED AFTER 3 DECADES IN THE DARK WITH NO FUNDING,NO ATTENTION, NOTHING BUT SUFFERING, IS LARGE TRIALS, REAL PUBLIC INVOLVEMENT,REAL ME/CFS EXPERTS AS PART OF LARGE STUDIES, NO MORE CONTROLED SMALL STIDIES, LARGE BUDGGETS ON THE TABLE TO CALL THE ATTENTION OF SCIENTISTICS AND PHARMACEUTICAL COMPANIES THAT WILL TAKE ON IT, WITH 2-4 MILLIONS IN UNITED STATES, CLOSE TO 30 MILLIONS AROUND THE WORLD IF NOT MORE, THE TREATMENT FOR THIS ILLNESS COULD BECOME A TRILLION DOLLAR EMPIRE FOR PHARMACEUTICAL COMPANIES.
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