#MEAction RFI Poll Report (Part 2 of 3)

This is the second part of the RFI Poll Report.  To see the Part 1, click here.

The Need for an Inclusive Model of Research

Severe patients

The inclusion of severe patients in research emerged as a theme in stakeholder comments. Severe patients will likely present with gross biological abnormalities, and therefore present a significant opportunity for discovery in ME research. Moreover, stakeholders stated that helping these patients was a moral imperative.

The comments on the #MEAction survey reveal that ME patients in general are eager to provide information to researchers, and excited to participate in research that might lead to treatments or greater understanding about the illness.

Direct involvement of patients in research and steering

Many stakeholders stated the importance of patients and patient advocates being involved in the process of policy decisions regarding ME, and guiding research.

Involvement of experienced ME researchers

Stakeholders also expressed the need to fund research carried out by experts in the disease and seek their help in guiding broader ME research questions, including epidemiologist Mady Hornig and virologist Ian Lipkin at Columbia University, geneticist Ron Davis and infectious disease specialist and cardiologist Jose Montoya at Stanford. Respondents rated the importance of the inclusion of biomedical experts in ME a 4.73 of 5 in terms of importance.

Multiple respondents wrote in to specifically ask the NIH to fund Ron Davis’s research into metabolomics in the illness. Now that Davis has discovered marked changes in cellular respiration in severe patients, he will be able to generate more specific hypotheses, but his small study had to be privately funded in order to get this far – unacceptable, given his passion, expertise, and ability to pull in experts from various disciplines to research this complex, multi-system illness.

Stakeholder comments:

“There are many people who would like to be involved in the actual physical research or have the technical data simplified so they can read and digest it easily. Many people with CFS/ME can understand the research and will be able to offer a more insightful view if they were more hands-on and able to participate in a more proactive way.”

“Remember that patient participation can be genuine or token – we don’t need the equivalent of greeenwashing, a token blessing on the design of studies by a tame and ill-informed group of patients. After being alternately ignored and denigrated for so long, patients are going to want real input.”

The need for an Institute

When asked where ME/CFS should be housed, 81.49% stated ‘in a new institute’ (n = 1529).

Trans-NIH 22.89%
NINDS 34.60%
NIAID 23.22%
New institute 81.49%

Stakeholder comments reveal that the most common perspective is that ME has theoretical access to funding from multiple institutions that translates to little funding from any institution.


Figure 1

Stakeholders found a high number of symptoms of ME worthy of study, with post-exertional malaise rated as most universally important.

While patients rate PEM as a high research priority, the ethical considerations of testing for and studying patients with PEM are considerable, as is reflected in stakeholders’ low rating of the desirability of performing second-day exercise testing (3.69, see part 3 of the RFI). First, overexerting ME patients places their health in danger. Second, the only patients capable of an exercise test are the healthiest of patients, skewing data.

ME patients were particularly disinterested in studying the relationship between ME and depression.


Pathogenic and non-pathogenic triggers
05. Triggers
Figure 2
Respondents were primarily concerned with viruses, as reflected in the highest-rated responses being for research into EBV, herpesviruses, enteroviruses, and the gut microbiome. Non-pathogenic triggers rated generally lower for most respondents, with the average score for non-pathogenic triggers being 3.08/5, and pathogenic or immunologic triggers 3.79/5.
Many respondents stated that a single pathogen alone is unlikely to be the causative factor in ME.

Stakeholder comments:

“…It is known that this population often lives not only with a host of reactivated common viruses, but bacterial and all other pathogens are found in much higher numbers within ME/CFS than your average person. In the meantime there is obviously some fascinating research on the microbiome including that ME/CFS appear to suffer low diversity gut bugs. The question is obviously why we are susceptible to all manner of infection…?”
“Important studies, such as those in MS, have pointed to links between the gut microbiome and symptoms and this could be the same for people with ME/CSF…. Most important is developing a general pathogen screen profile that can help guide healthcare professionals into providing a wider array of tests than is generally done currently.”
“The question is more likely ‘what is wrong with the mitochondria or immune system of the patients that get ME’ as opposed to ‘what are the pathogens that cause ME’. Why do some people recover from the pathogen and move on, while others are never the same?”

Thank you again for your contributions to the RFI poll.  We couldn’t have done it without you!
Click here to read Part 3 of 3


24 thoughts on “#MEAction RFI Poll Report (Part 2 of 3)”

  1. Its fascinating how everyone, anyone with less than average IQ , can see this illness is caused by an infectious pathogen, there is only one chronic illness around the globe that can cause the human body to shut down the immune system and that only one is “”AIDS””, It’s 95% identical to ME, AIDS starts with getting sick easy , accumulating infections, until viruses like EBV ,CMV,HHV-6.. Help to progress HIV to AIDS, The reason is simple , this viruses are herpes, they are dormant, but when the immune system is impaired, they reactivate and replicate thru out the body, organs, gut, central nervous system , these are same viruses that are associated with trigger on ME/CFS,, don’t this look like we may have and adquired pathogen like HIV , that with the depletion of the body and immune system it allow viruses , bacterias , infections, that deplete the body even more to finally progress to CFS ?? That’s how this looks all the way around
    NIH ,CDC, don’t see this? People so bright with so much talent, so much resources don’t see this?
    I strongly believe that there is a very strong motive that it’s holding back the Goverment(s) to expose the real cause of this desease, otherwise at this moment after 30 years of neglecting this desease, knowing how debasteting it is, the gorverment at all institutional levels should have this as a priority, this should have been the number one Health concern for them, for CDC…. But it’s not, WHY???
    This looks to me like a political response from the NIH and not like a real concern followed by the urgency of finding the real cause to this disease.
    I think one of the top priorities of ME Action and most of the ME associations around the world is to raise awareness, but not just word of mouth; that’s very important, but the awareness that will put this disease where it needs to be and be taken serious, with the sense of urgency that it deserves from the goverment(s), it needs to be at political levels. We need media coverage, the public needs to know and have to be aware this is a real concern, that this could be a transmissible disease, showing the public the so many similarities that has in the immune system disfuntion, cellular disfuntions like AIDS .
    Why people run scare with SIKA? EVOLA, Because the goverment puts the word Out there, Its all over the news. Its the only thing they talk in the news for months.
    Everybody talks about it, how come illnesses like those get all the attention from the media, politicians, even the PRESIDENT, the goverment does not hesitate to put the word out, to create panic, to create concern in the public, why don’t they do the same with CFS/ME?? That its far more concerning than any of this other small groups of isolated cases.
    We need to do it ourselfs. We need to make head news on national television, so the community, politicians, Doctors, humanitarian institutions, associations, can give the sense of urgency to this disease that the government is still not giving it, regardless of three decades of being neglected, having millions of americans suffering and dying from complications, cancers, infections, staying home incapacitated. National media, national attention, Day and night making this political issues is the only way We will make real progress!!

    1. Best Explained –> HIV is an innocent passenger in a hi-jacked car. You cannot deny its presence, but HIV wasn’t “the cause” of the crime.
      The reason why most HIV+ people remain perfectly healthy, for decades, is because HIV requires a *co-factor* to accelerate. These co-factors of AIDS are the very same undiagnosed causes of CFS.
      AIDS patients are simply the undiagnosed CFS patients of the otherwise perfectly healthy HIV+ population.
      In conclusion, AIDS = HIV + CFS.
      Problem solved.

      1. Hi lemonfoundation,
        Im not sure about that part You maybe right, the two deseases ME and AIDS have been compared Many times by ME experts, doctors, scientists .. But what i know for sure that thesame viruses that have been blamed and associated to trigger ME, hérpes viruses like HHV-6,CMV,EBV,HSV-1-2…hérpes in general have been associated to be the trigger to cause to progresión from HIV to AIDS….but wat You said it could be thruth, when XMRV was to be blamed as the cause of ME, most of studies suggested that the retrovirus was far more COMPLEX than HIV and didnt respond to most of HIV ART’s,, only the nucleosoide NART seen to have some type of benefic, the NNART have no effectines, so yes it seems to a be far more COMPLEX than HIV.. Shower replication or mechanism but more COMPLEX, thats why the underlaying couse of ME is been associated as probable cause of other neuro immune desorders and maybe thats why the goverment has ignored for so MAMY DECADES… for the social economic and political impact of a new phenomenom like this,, will cause billion and trillion of dollars to the economy, as Jaime said this is more than clear that it’s AN IMMUNE ADQUIRE DESEASE , not just Klimas , mikovits and may doctors and scientists have said and believe that the only ones not to see this( or don’t want to see this) is our goverments and their agencies like NIH, CDC, HHS, the agencies in Uk.. They have the ones to used all their tools to make this see differently, that’s why the progress and real findings have been done in other countries.
        The findings here in United state and Uk have been suppressed and manipulated always sorrounded by conspiracy theories.
        But like I said thanks god the world it’s starting to see this for what it’s and hopefully soon the truth cause will be find as Montoya said, leading to effective treatments.
        The numbers are on the raise in a way that indescribable . In the past you hear isolated cases now we are taking every corner you hear people with, ME, MS,AUTISM,ALS,GUILLIAN DESEASE,CHRONE..ME having the most severe debilitating cases.
        Waylnd, I’m not sure how much you have had research but you said something right and something wrong. Immune over active yes absulstely right as Montoya said and we all know, the immune over active is a result of immune defficiency and they go on a cycle , it’s over active becouse people with ME have their killers cells very low, their helper cells suppressor cells are very similar to a person with AIDS that allow viruses infections to spread to replicate, that’s why you see ME suffers with active , mycoplasma, active coxackie , active and reactivate es EBV, CMV,HHV6,VARICELA ZOSTER(SHINGLES)..All this viruses and bacterias in healthy immune individuals will do no harm or Very little , immune take control and they never reactivate onless later in Life or with a cronic immune activation in the case if hérpes , so yes We have over active immune but exactly for that reazon , this reactive héroes viruses spread replicate to organs, central nervous system, gut etc.. And Our immune with so Many things going on around is in constant over active stage.
        Also what was mentioned before could play a role, if We have a retrovirus that also can keep immune system over active, Im strong believer that one if main gut leak problems We have and poor Good gut bacteria is do to viruses, hérpes or even mycoplasma not been stop by Our immune system and supressor and helper T cells and they have spread and alócate in the stomach and gut, killing Our Good gut bacteria, when the immune try to clean out the virus swipe out everything, kind of like what happen with MS, the immune try to clean the héroes inffection From central nervous system and BRAIN them do the damage to the mylin of the nerves, creating lessions.
        Also HTLV-1 TSP/HAM immune try to clean the inffection cytokine store to central nervous system causing the damage.

        1. “UC Berkeley professor denies link between HIV & AIDS” published @ Daily Californian.
          “For over 20 years, UC Berkeley professor Peter Duesberg has believed that HIV does not cause AIDS, an opinion that he says has limited his academic career and alienated him from the scientific community.
          “You cannot find the (HIV) virus, only antibodies, and it doesn’t spread via sex as it should,” Duesberg said. “HIV is a harmless virus. I have said that before, and I continue to say it.””
          Outstanding, award-winning documentary (that can be seen on youtube) –> http://www.houseofnumbers.com/
          or simply google “NON HIV AIDS”

          1. Wouldn’t “non-HIV AIDS” just be any immune dysregulation not caused by HIV? I’m not trying to bait, here, I’m wondering why we’re calling it AIDS when part of the definition of AIDS is that it is caused by the virus HIV.
            There are a lot of immune dysfunction syndromes with differing etiologies. We don’t call them all AIDS. By the same token, there are multiple neurological illnesses, and they’re not all Parkinson’s. We’re going to have to come up with some pretty convincing science to show they’re related! One guy denying the relationship between HIV and AIDS doesn’t convince me, because AIDS has always had some seriously flawed theories around it.
            Just the other day, I was having a discussion where I presented some papers about AIDS that had come out in the past five years. One said that it was — wait for it — an entirely social construct due to the gay population being marginalized and stressed out. In other words, they claimed AIDS was a psychosomatic construct. This paper was published very recently! The AIDS landscape is so fraught and has such potential for advancing one’s career that there are always going to be unsubstantiated theories, some of which are truly wild, floating around. “HIV is a harmless virus” qualifies. To state that it doesn’t spread via sex as it should is also mind-blowingly false, as shown in the way that AIDS cases decrease in populations as unprotected sex decreases. That some people don’t contract HIV from unprotected sex does not disqualify the entire trend for significance.

          2. All NON HIV AIDS cases are ICD-coded “CFS,” where millions of cases (like me) are hidden in plain sight (1). Contagion aside, “CFS” is an acquired immune deficiency syndrome, and CFS has been compared to AIDS right from Day-1 (i.e., the 1984 outbreak in Lake Tahoe, NV) (2) Chapter-33 of Hillary Johnson’s acclaimed history book on CFS “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic ” is entitled “HIV-Negative AIDS.” (3)
            1) HIV-Negative AIDS?: http://www.prohealth.com/library/showarticle.cfm?libid=18064
            2) 12-minute PrimeTime Newscast (listen at Minute-4) –> http://www.youtube.com/watch?v=AW0x9_Q8qbo&feature=related
            3) Osler’s Web: https://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/0595348742/ref=sr_1_1?ie=UTF8&qid=1471329202&sr=8-1&keywords=osler%27s+web

          3. AIDS has been compared to ME from day one, as an illness with similar features. However, that does not mean they are the same illness. Calling it HIV-negative AIDS co-opts the name of another illness taken more seriously than our own.
            We still don’t know what causes ME: all we have is favored theories. Until we get better-funded research, that is all they can be.

      2. Are you familiar with the concept of viral tropism? HIV uses the CD4 cell receptor to enter and infect cells. AIDS is caused by depletion of CD4+ T cells, killed by the virus. It’s really not that hard to understand. What is hard to understand is the point of HIV denialism.
        You should read the case definition for AIDS. None of the requirements for an AIDS diagnosis are things that occur in CFS patients. It’s completely different.

        1. Hi wyland,
          Maybe you are an HIV Scientistic or a researcher and if that’s the case accept my apology!!
          If you are not my answer is, yes I know HIV uses a Cd4 receptor, I know the depletion of the T cells, the more infected cells, the more killed cells the more chances of progression to AIDS, you are right that’s no hard to understand !!
          But thesame way you have read about the the CD4 and the explanation you just give me, you should also know that beside the CD4 infected cells wich just explain the mechanism of HIV, there is been many other viruses associated with the progression to AIDS, especially herpes viruses, we are in 2016 , 26 years of billions dollars in HIV research , many ART, NART’s NNART’s, .. One pill a day , and even today around 13,000 AIDS people die every year in United States alone , why??? Virus mutation ?? Tolerance, genetics?? Why?? Can you explain that? Why there is Also subgroups of people that still take retrovirals an still die? When most of others HIV can be healthy people And live very normal life’s !!
          Many studies from HIV researchers have associated viruses like CMV,HHV-6,HSV-1-2 , why people with AIDS still die of cancers and infections while others don’t , neither you or anyone of us can answere that question, becouse medicine today days, especially here in our country is not always in the best interest of the Heath and cure of people, it goes alone with economy$$$$ money interest of the big pharma , the big empires, and political, they don’t always tell us all the truth .
          Unfortunately they have create a system were the control everything, from studies, what they allow people to research, who they allow to be in the research, what the allow people to validate , when there is finding that is not in their best interest , they have NIH , to in different ways disprove it or doubt it, if NIH not enough CDC,FDA will take over with their power to suppress any findings they don’t want to go public or be validated.
          Since you know so much about the difference between ME/CFS and AIDS.. Can you tell me more especific how it looks a result of a complete immune panel of a person with ME vs one with AIDS.. In general the big differents that make them so different.
          Couse I have seen both, I have seen an Me immune lab, with T lymphocytes in the 400’s, 500’s when the normal needs to be between 800-1600 roughly, I have see Me with killer cells 3.5 , helper cells, suppressor cells at levels of a person with AIDS..
          Are you a person with ME??..
          Average living age in ME is 47-57 more than 20 years shorten than the life expand average of healthy people.
          So you are really telling me that ME doesn’t not present itself as an immune defficiency deseas regardless of knowing that people get viruses and infections like ,HHV6,EBV,CMV,coxackie, mycoplasma , bartonella, clamydia, and all this viruses and bacteria staying active, replicating or reactivating are not an immune defficiency ??
          In your eyes what is it??
          PHSYCOLOGICAL ??
          Predisposition ??

    2. ME and AIDS are quite different. Herpes viruses in general reactivate in response to immune activation, not necessarily immune deficiency. The immune damage caused by AIDS allows these infections to progress to kaposi’s sarcoma, CMV retinitis, etc. These things don’t happen generally in ME. Instead, in ME there is kind of an opposite state, one of immense, persistent immune activation. As Jose Montoya has recently reported, ME patients have lower levels of torque teno virus in their blood, as opposed to the higher levels that are found in immunocompromised states. This is further evidence that ME is more about immune activation and less about immune deficiency, at least in general.

      1. Lipkin’s and Hornig’s cytokine study would support that there is a period of immune hyper-activation followed by a period of immunodeficiency. I have ME and my immunologist has commented several times that if he didn’t know any better just looking at my bloodwork, he’d swear that I have HIV. I think it was Klimas who said, “I’d call it acquired immune deficiency syndrome, but the name is already taken.”

        1. Its exactly as you just said Jaime s,
          What happen is that most of people dont have access to an immune system detail lab, they All go with the basic every Day pannel that does not show NK cells funtional , lymphosites , helper cells supressor cells, T cells etc .. But my detailed immune lab seen to be of a person with HIV / progressing to AIDS .. If Our immune was not disfuntional and defficiency neither virus would of replicate, neither We would of been sooo subsectible to All this pathogens Out there that couse serious harm on Us and Very little on most of healthy people.
          Like i said before , Thanks god the world is already seen this for what Its , there is not much more time to cover ups and conspirancy, i hope our goverments will finaly realized that, becouse even through they now accepted this desease do to the retusimax finding, they still putting tons of obgections and still using Very little Resourses, to such a conolex desease , that have been neglected for 30 years, with millions of Americans cronicly ill, now if they goverment dont put All their resourses to solve and find cause and treatment for this desease is a clear evidence that the desease have been neglected for 3 decades do to the social economíc impact.
          If now that Its clear what this desease is, the goverment dont treat this with clarity , transparency , using all their resources to solve this crisis, them it will really have political repercutions at the national and international levels, we are the leading country of the world, the most respected and powerful one, we have the largest Me population , and we were the last ones to realized this is a real cronic desease with mayor immune disfuntion ?????

          1. I have had NK cell function tests done, and everything you mention — and as remarked above, there are definitely similarities in my bloodwork to that of someone with HIV. But there are differences as well. There are those who make this argument to state that patients ‘really’ have lupus, MS, fibromyalgia… It runs the gamut. The truth is that none of us yet know the truth. Only time, money, and the hard work of research and advocacy will get us there.

        2. I’m not sure we can jump straight from lower than normal cytokine levels to immune deficiency. They make no claims of immune deficiency in the paper from what I recall. I’m not sure what blood work in ME looks like HIV, most people I’ve seen have an inverse CD4/CD8 ratio, opposite of what is seen in AIDS. Acquired immune deficiency would not be an accurate name given what we know to date. Dysfunction perhaps, but not deficiency. Not to mention correlation isn’t causation, some people with ME might have had immune deficiency to begin with, before onset, and this may have contributed to it, rather than the other way around.

          1. I agree that you might have to have immune dysfunction to get ME in the first place. My physician was referring to the types of infections I get, which are only seen in immunocompromised individuals, as well as my typically low WBC count (and maybe my high IgE). The Lipkin and Hornig study shouldn’t be simplified as ‘high cytokines early’ and ‘low cytokines later on’. If I represented it that way, I misspoke. 🙂 Generally pro-inflammatory cytokines are high early in the illness and low later on in the illness.
            From Hornig herself:
            “The new research suggests that these infections throw a wrench in the immune system’s ability to quiet itself after the acute infection, to return to a homeostatic balance; the immune response becomes like a car stuck in high gear. “It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop,” says Dr. Hornig.”
            One only has to hang around the PR forums to see how many ME patients have symptoms of immunocompromise (which is also where I found that quote!)
            That other parts of the immune system seem revved up for the duration of the illness may also be the case. In my own version of the RFI, I mentioned the ‘sick but never sick‘ phenomenon: patients may suffer from overgrowth of pathogens that are understood to be both harmless and native to healthies, yet we can’t seem to catch illnesses from others. This may have something to do with errors in one part of the immune system’s function causing other parts to kick into overdrive (acquired vs innate immunity?)
            I think we’re essentially saying the same thing, that some parts of the immune system might be hyperactive while others are underactive. This is actually true in HIV as well — for example, IgE is a marker of immune activity that tends to be elevated, not suppressed, in HIV patients. This pattern of some aspects of the immune system suppressed while others are hyperactive would not, therefore, be something that differentiates HIV from ME, but something that they have in common. 🙂
            However, it’s almost all entirely speculative. Unfortunately, ME research is still in its infancy.

  2. I most definitely don’t have aids. My parents don’t have aids nor does any other member of my family. My blood work suggested lupus but was negative. I have M.E
    I’m not hiv positive.
    I’ve had this illness since birth. My mother’s side of the family all have neurological issues neuropathy and auto immune including osteoporosis. I’ve never had a cold or flu. I’m rarely ill apart from my .M.E
    In order to say everyone had the same illness we all needed the same cause or more likely we have a biological reason that we were born with and something kicked it off.
    I’m most definitely not stupid for not believing I have hiv or aids

    1. No body is saying that you have AIDS or HIV, don’t take it offensive Julia , what we are saying is that if a normal person with healthy immune system are not so subseptible to get so many viruses and bacterias, far less having them replicating and affecting central nervous system etc.. Disfuntion or defficiency is THESAME thing to me, the bottom line is that viruses and vacterias can replicate, we are comparing people with ME statistically have high rates of cancers like people with AIDS, people with ME are more subsectible to get viruses and allowing them to reactivate and cause harm damage to cells mitchocondrias etc. like people with AIDS.. If your family have ME neuropathy is not know or provent this is genetic, it could be subset of people diferent than others or it could be like in the case of HIV, or HTLV-1.. It could be passed from mother to child and with the accumulation of viruses infections do to the immune defficiency or disfuntional later in life developes neuro desease like ME.when is direct like mother to child breath feeding that raise the chances a lot more to developes cronic deseas , search HTLV-1 TSP/HAM..you will see how it could be transfer from mother to child and the chances of developing cronic tropic associate myelopathy .. It’s like MS.. If you are carring from your family the (unknow pathogen either a virus or retrovirus even a vaccine at infant and childhood can cause the illness to progress. Vaccine are mostly viruses.
      Have You check yourself for viruses?? Have You ever done a complete immune panel, including funtional killer cells etc?? Lymphosites ?

  3. What Jaime s just said its what I was referring myself . It’s more than obvious that Me, is an immune defficiency( or dusfuntional ) desease , for the purpose and severity of the illness it doesn’t matter disfuntional or defficiency.
    In people like Julia you can thing of genetic but (HIV,HTLV-1) can be passed from mother to child direct line breast feeding, there is millions of people with htlv-1 that don’t know they have it couse small percentage of people developer the central nervous system disabling trop associate melophaty.
    When you see people like her it may see genetic about when you see husband and wife perfectly healthy individuals that one come down sick with Me, and little later the other person also come down with ME…how do you explain that?? Tw different genetic body’s ?? Them later you see a child with symtoms , immune defficiency since little continuous viruses, take long time to clean , recurrent infections, respiratory , easy bruising .. In you tube you can see videos of people married that they have post it, one person got it, the other one developed 4-5-8 years later .

    1. Kimberly,
      My guess is that ME requires both an infectious agent / stressor and a genetic predisposition that some have and some don’t. This still doesn’t mean HIV, and I’m not sure why we’re lingering there except that it’s a pathogen that is taken very seriously by the public. After years of our illness being dismissed and ignored, having it revealed to be a form of AIDS would be very vindicating. However, illnesses and syndromes might have many similar symptoms and similar bloodwork and yet be classified as two different illnesses if they have different etiologies or different end-presentations.
      For example, take a look at MS and ME. The article Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics is just what it says on the tin: its authors compare symptoms and bloodwork for the two illnesses and shows show similar they are. Will ME be classified as a type of MS? Probably not; yet they are two incredibly similar illnesses with far more in common bloodwork-wise than ME and AIDS.
      Evidence for genetics: in my household, my mother, my sister, and myself all have some form of ME. My stepfather, who lived with all three of us, does not. My brother-in-law who lived with us does not; none of my good friends growing up developed ME. Of course this is a very small sample, and my personal experience only, and I only refer to it to show where my own opinion comes from, rather than to cite as evidence. One person’s experience is not a study!

      1. Jaime what You said about Me,Ms,, Im strong believer that ms, me, fibro they all have to have and infectious agent, not just a regurlar EBV or HHV-6 , that by they way they are also associated with all there illness, also associated with retinitis and other desorders in AIDS, ALS, All this deseases that in the old days You hardly Hear about them in the Last decade have multiply by 100 times , You Hear every córner people with different inmmune desorders with ME at the most severe desabling levels , when i when to my doctor first time in told the doctor: doctor You gona think Im crazy like most doctors think but i have All this symptoms together.
        to my surprise she answered, no i dont think You are crazy becouse my Sister 23 years sold started 9 Months ago this this Many symptoms like You We were going crazy , until she finally got disgnosted with Fibromyalgia by a doctor that knows nothing about ME/CFS..You Hear about cases Friend every other Day Im my circle of friends there is couple fybro, Me, scleroderma ,i Hear about some i know with ALS about to die, guillian desease… This is epidemic with Out a doubt. It look a like the goverment realized this, that the Numbers were increasing to QUICK to much , this was going Out of hand and they come up with some sort of retrovirus interceptar to clean the blood BANKS and vaccines, for MLV in particular that have been Many times associated with this illness, like XMRV is form MLV gama retroviruses .
        That was their answere to the crisis, that will only slow down a little be the numbers, and protect them of any polítical NEGLIGENCE in case it resurface again that a retrovirus From MLV Its to blame for all this cronic desorders. But us that already have it?? They will never accepted this is and immune adquire desease , if You see they are not treating with urgency as a possible transmisible immune adquire infectious desease, despite the resamblance with AIDS, regardless of the immune disfuntion , high rates of Cancer etc.
        If You see the most cases of ME, are in US,UK,AUSTRALIA, CANADÁ..( NATO)..Alliance Countries, They All have dismissed a desease almost like AIDS for 3 decades and nothing happen, something so obvious.
        The cause of this will be found soon, people are not buying any more genetic or anything .. Your case is the oposite of what You said ( genetic ) no at All , if it was genetic Your grampa would of had it, the prevalence of this is in woman, with All do respect she may of got it From some one, or From vaccine or blood transfusión and You and your Sister probably got it From her direct line, breastfeeding or at birth , like HIV and HTLV-1 is transmistted. It doesnt mean your Dad had to get it but( their is lot of married people that one got it, then little while after or years later the other person got it, Its documented even 10 years later.
        Im going to copy a vídeo of a family were the Wife suicided and before she made a vídeo saying she got it, them 8 years later her husban got it From her, she clearly said , this is a transmisible desease , whatever cause this is transmisible .
        Like that there is tons.

        1. Kimberly,
          I think we’re going to have to agree to disagree. We just don’t know what causes ME. We may have theories we like better than others, but until there is better evidence, we cannot be certain.
          What we know for sure is that patients are suffering, patients are dying, and we need more funding to research this disease in order to confirm etiology and find treatments. What worries me most is that when we push one idea overwhelmingly, we don’t make room for other possibilities. An open mind is absolutely necessary in order to move advocacy forward; otherwise, we back research into a corner and demand it reveal what we most want to be true. We don’t let science be science.
          I think this is the last comment I will make on the topic.

  4. Wyland,
    Jaime s, take a look at this:
    [Edit} – Kimberly mentions that CD-4 cells are very low in ME patients.
    Kimberly, please don’t cut and paste an article here, or all the chapters from a book! Just your own words or a link, please.

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