(Here we go again? Just months after Jennie Spotila uncovered the mess that was the IOM contract, she reports another ME/CFS project is going on behind closed doors. Once again the principals aren’t talking. Ironically the government is starting to spend some money on chronic fatigue syndrome, but only on it’s terms.
Thanks to Jennie for allowing Health Rising to reprint her article. (Find the original article here.) A former attorney, Jennie Spotila served on the CFIDS Association’s of America Board of directors from 2006-2011. If you’re interested in advocacy issues you’ll want to subscribe to her blog. Cort)
There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of Medicine study. In fact, what I’ve learned about the meeting may strike you as worse than the IOM study process.
TL;DR Version
- The P2P Working Group roster has not been made public.
- The P2P Working Group will finalize the study questions for the evidence review and workshop.
- I can exclusively reveal who was contracted to conduct that evidence review.
- I can exclusively reveal the draft study questions.
- The P2P panel, which will conduct the Workshop and write its report, will be 100% non-ME/CFS experts.
There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of Medicine study. In fact, what I’ve learned about the meeting may strike you as worse than the IOM study process.
What Meeting Is This?
January 6-7th is the first meeting of the Working Group for the Pathways to Prevention Workshop on ME/CFS. You may be more familiar with the old name for the meeting, the NIH Evidence-based Methodology Workshop. At the May 2013 CFS Advisory Committee meeting, Dr. Susan Maier clarified the purpose of the Workshop “is to identify methodological and scientific weaknesses in a scientific area and move the field forward through the unbiased and evidence-based assessment of a very complex clinical issue.” The Workshop itself will not create a research definition for ME/CFS, but Dr. Nancy Lee said that the output of the workshop could be used to inform such a definition. (CFSAC Minutes, May 23, 2013, pp. 6, 48-49)
The Pathways to Prevention Program (P2P) is operated through NIH’s Office of Disease Prevention. Each workshop process takes about a year from start to finish, and its foundation is a technical brief providing “an objective description of the state of the science, a summary of ongoing research, and information on research needs.” This brief is prepared by one of the Agency for Healthcare Research and Quality’s (AHRQ) Evidence-based Practice Centers (EPC).
At today’s meeting, the Working Group will finalize the study questions that frame the entire workshop process. Obviously, the questions are of critical importance since they form the basis for the evidence review and technical brief, as well as the public workshop itself. But before we get to the questions, don’t you want to know who is on the Working Group?
Who Is On This Working Group?
Guess what? We don’t know. At the May 2013 CFSAC meeting, Dr. Maier reported that 35-40 potential names were forwarded to the Office of Disease Prevention for possible service on the Working Group. She said that the list included ME/CFS experts, advocates and patients, including some CFSAC members. Despite vigorous objections expressed by Dr. Mary Ann Fletcher, Dr. Maier did not share the list, did not allow CFSAC to provide input, nor did she indicate a timeline for the release of that roster. (CFSAC Minutes, May 23, 2013, pp. 8, 49)
Unfortunately, Dr. Maier also did not provide the roster at the December 2013 CFSAC meeting and, to my dismay, no one on CFSAC asked her about it. Dr. Maier has also refused an individual request for the roster prior to the meeting, citing “standard procedure,” and there is no indication whether or when that information will be made public.
Why is this a big deal? Because the Working Group helps shape the entire workshop process.According to the P2P site, “the Working Group is involved from the beginning to the end of the workshop planning process; it finalizes the questions that frame the workshop, nominates panelists and speakers, and selects the date of the workshop.” Interestingly, the Working Group is made up of “content area experts from the federal government, academia, and clinical practice.” Dr. Maier said the nomination list included advocates and patients, but we have no way of knowing if any were actually appointed to the Working Group.
The Study Questions
Dr. Beth Collins Sharp described the evidence review process in detail at the May 2013 CFSAC meeting. One of the AHRQ EPCs is contracted to conduct a comprehensive evidence review based on study questions. Those study questions were drafted by unknown federal employees, and are finalized with the input of the Working Group, the EPC and federal participants. This is happening today and tomorrow.
As Dr. Collins-Sharp said in May, “You can’t get the right answer if you don’t ask the right questions.” (CFSAC Minutes, May 23, 2013, p. 12) However, Drs. Maier and Collins-Sharp have refused an individual request for the study questions being presented to the Working Group today, and have said only that the final questions will be posted by AHRQ and ODP but provided no timeline for this. Incidentally, they have also refused to disclose which EPC was contracted to perform this review.
However, I can answer both those questions today because I obtained a copy of the EPC task order through FOIA. The “Small Systematic Review for Diagnosis and Treatment of Myalgic Encephalophyelitis/Chronic Fatigue Syndrome (ME/CFS)” will be conducted by the Oregon Health & Science University for $358,211. I will discuss this contract in more detail in a future post. For now, I draw your attention to the draft questions as stated in the Task Order, and presumably being presented to the Working Group today:
I. How do ME and CFS differ? Do these illnesses lie along the same continuum of severity or are they entirely separate with common symptoms? What makes them different, what makes them the same? What is lacking in each case definition – do the non-overlapping elements of each case definition identify a subset of illnesses or do they encompass the entirety of the population?
II. What tools and measurements will help define the subsets of individuals in the entire spectrum on ME/CFS? Are some of these tools already available and can they reliably detect a subset of illnesses? Is it possible to identify which subset of individuals is not defined by the current tools and measurements? What is unique about the illness quality in those individuals not captured by the tools available?
III. What are the characteristics of the individuals who respond to specific treatments in terms of the spectrum of the disorder? Why do some individuals not respond? What aspect of the disorder is most relieved by specific treatments? For treatments that have been shown to be effective, what are (is) the underlying mechanism(s) of action of that intervention?
IV. What does clinical research on ME/CFS tell us about clinical diagnosis of ME/CFS? Are there hints in the current literature for a consistent defining characteristic? In the clinical realm, what differentiates borderline “cases” into confirmed versus probable? Do co-morbidities help define subsets of the clinical cases?
V. Have previous research findings shaped current clinical practice or are research and clinical practice completely separate with respect to the illness? How much influence does biomedical research help shape [sic] the future of ME/CFS research?
There are so many issues with this list. For starters:
- Asking whether ME and CFS differ is critical (I), but this question fails to ask whether the mixed bag of “CFS” is even a valid clinical entity to begin with. It’s also important to note that the remainder of the questions (II-V) revert to lumping ME and CFS back together as one illness.
- Question II asks what tools/measurements can be used to identify subsets along the whole spectrum, i.e. NOT whether such a “subset” actually represents a separate illness. It also asks if there is a subset not defined by current tools and measurements. Huh? How could a subset be identified if there are no tools/measurements to identify them?
- Question III, the characteristics of patients who do or do not respond to treatment, rests in part on case definition. Will a systematic review dig into the raw data on studies such as the PACE trial or Ampligen trials to identify characteristics of responders and non-responders? Can applicable case definitions in those study cohorts even be assessed retrospectively (e.g. to examine a Fukuda cohort to see how many met the Canadian criteria)? Will the systematic review treat studies with different case definitions as equivalent (e.g. Oxford studies are as valid and relevant as Fukuda studies)?
- Question IV strikes me as the question actually being posed in the IOM study. The IOM will be identifying the evidence for various diagnostic criteria, and then develop evidence-based clinical diagnostic criteria. Including the same type of question here seems needlessly duplicative. And what if the two evidence reviews come up with different answers?
- Finally, I can answer Question V myself: it’s both. There are a number of key clinician-researchers who maintain a clinical ME/CFS practice and conduct research. For those individuals, their research influences their clinical care and vice versa. But for the rest of the world, we know that clinical care is completely divorced from ME/CFS research. Based on the horror stories we hear from patients, based on the dramatic under-diagnosis of the disease and simultaneous use of CFS as a wastebasket diagnosis, I think it is abundantly clear that research and clinical practice is separated by a great wall for most patients.
The Working Group’s planning appears to be closed to the public, and we have no input onto the final questions. We wouldn’t even have this draft list if I had not managed to file a successful FOIA request. The anonymous Working Group will finalize the questions, and these will be posted publicly – although we have no timeline for that.
Non-Experts By Design
Supposedly, the Working Group is made up of ME/CFS experts. That’s the impression Dr. Maier gave at the May 2013 meeting, and by the P2P website. But the P2P Panel is a completely different story.
The P2P Panelists perform several functions: review the evidence report produced by the AHRQ review; attend a pre-Workshop webinar to discuss the evidence report and additional materials; attend the Workshop and ask questions of the presenters; prepare a draft panel report; and review and incorporate public comments to finalize the report.
Panelists can be nominated by members of the Working Group BUT there are significant restrictions on their expertise. Specifically, the panelists:
- May be knowledgeable about the general topic under consideration, but must not have published on or have a publicly-stated opinion on the topic.
- Must not have intellectual conflicts, such as participation in statements by professional societies or participation in advocacy groups on the topic.
- Must not hold financial or career (research) interests in the workshop topic.
Let’s be very clear about what this means. If someone has ever published on or made a public statement about the diagnosis and treatment of ME/CFS, he/she is disqualified. If someone has participated in statements from professional societies or participated in advocacy groups, he/she is disqualified. If someone has a financial or research interest in the diagnosis and treatment of ME/CFS, he/she is disqualified. Furthermore, there is no public comment period on the panel roster like there was for the IOM panel. In fact, it’s not even clear to me how far in advance we will know who has been appointed to the panel.
If the IOM process makes you mad, then this process should make you furious. There will be no ME/CFS experts on the panel that writes the Workshop report identifying methodological and scientific weakness in ME/CFS, suggesting research needs, and providing “an unbiased, evidence-based assessment of a complex public health issue.” The only involvement of experts will be through the Working Group and through the presentations made at the Workshop. I only see one upside to this arrangement: anyone who has been associated with the psychogenic model of ME/CFS will also be excluded.
This process may work very well for the “generally noncontroversial topics” that P2P is designed to address. For example, I can easily imagine the benefit of non-experts examining the state of research for a rare genetic disease. Only one other disease has been examined through P2P: polycystic ovary syndrome. The P2P workshop examined the current diagnostic criteria, causes and risk factors, and prevention and treatment strategies. There were only four panel members: an obstetrician-gynecologist, a cardiologist, the executive director of the American College of Nurse-Midwives, and the Executive Dean for Research at the Mayo Clinic. No patients or advocates spoke at this Workshop. It is not clear to me how well received the panel’s recommendations were in the PCOS patient community.
There are obvious problems with trying to apply this process in ME/CFS. First, there is no single body system to focus upon. While the PCOS Workshop could draw on endocrinologists, gynecologists and women’s health experts, what is the specialty pool for ME/CFS? Second, it is well known, and I believe generally accepted, that doctors and researchers without ME/CFS expertise will still have preconceptions about the disease. We need look no further than FDA for an example.
It wasn’t until after the four-hour active listening session in April 2013 that FDA representatives, by their own admission, began to understand the seriousness of the disease, and this was a group of people who were familiar with ME/CFS to some extent. If the P2P panel is comprised of people with little ME/CFS knowledge and possibly negative preconceptions, and the Workshop does not include significant participation from ME/CFS patients and advocates, it seems unlikely that the best results will be achieved. Based on our decades of experience with misinformed scientists, clinicians, and policy makers, it is very hard to trust in such a process.
Bottom Line
Almost the entire process of this Workshop is being conducted behind closed doors. The Working Group roster has not been released. The Working Group meeting is not open to the public. The draft questions were obtained only through a FOIA. There is no information about when the final questions will be posted. We have no idea who will be on the Panel, or even who will make that decision. And the only way ME/CFS experts are likely to participate is through the Working Group (IF there are any on the Working Group) and through presentations at the meeting. The extent to which members of the public will be able to participate is completely unclear.
So if you are worried about the lack of ME/CFS experts on the IOM panel, or if you think that the public will not have a sufficient opportunity to participate in the IOM process, pay attention! The NIH P2P process looks even worse. We cannot lose sight of the forest for the trees, and IOM is not the only moving piece on this chessboard.
What can we do? I believe that advocates must demand more information about the P2P Workshop, and must demand meaningful opportunities to participate. The planning and execution of the Workshop should be transparent if it is to have any legitimacy in the advocacy community. I urge you to participate in both the IOM and P2P processes at every opportunity – ask questions, provide input, and present a united front based on the truths we know about ME/CFS. We cannot wait until the end of the P2P process to make our voices heard, especially since this process will provide input into the IOM study.
I still believe that the key to our battle lies in our BLOOD.
If you look back at the struggle with AIDS it was not until a very rich family in SF had someone infected with AIDS, through a transfusion that anything got going.
I am married to a woman with CFS, and we were told repeatedly, vehemently that it was not contagious. Well guess what? 14 years later I end up with CFS, and if you read blogs there are hundreds of us in the same situation. If they want to make this a psychological disease, well then you should have no problem with our blood, and that’s just what we’re going to do if we don’t get ……….. and we lay it out for them! Forget the CFSwhateverSociety that said not to donate- we’ve had enough! If things don’t change we’re going to start silently infiltrating the nations blood supply.
We need to organize as a body of suffering patients and take on this fight without the committees, they’ve gotten us nowhere in 35+ years.
Greg
Greg,
We’re all upset, but I hope you’re not serious about donating blood. Alot of innocent people would suffer as a result. It’s no solution.
Chris
Wellllllll . . . obviously–something DRASTIC has to happen to WAKE UP these POLITICAL ‘powers that be’ out of their OUTRAGEOUS LUNACY, STUPOR and MALtreatment towards this GLOBAL EPIDEMIC of ME/CFS. They need to WAKE UP to the REALITY of what THEIR collective ACTIONS, INactions and SABOTAGE against US pw with ME/CFS and AGAINST the SCIENCE has and IS causing–a GLOBAL EPIDEMIC!!!
‘IF’ this HORRID DEBILITATING never-ending disease of ME/CFS is so ‘unassuming’ — then what COULD possibly be the problem with our blood giving ?? WHAT would ‘they’ then have to say about that scenario ??!!!!!
Verrrry worrisome, indeed–I am EXTREMELY concerned also about the potential of family members contracting this HORRID disease (from me) and I believe that is a very REAL threat which is EVIDENCED by others!!
ME/CFS IS CONTAGIOUS AND EPIDEMIC–made EPIDEMIC by ‘the powers that be’ because of the POLITICAL cover-ups and outright LIES–YET still to this day ‘they’ have TURNED UP the VOLUME in their ‘POLITICAL MOVEMENT AGAINST PW ME/CFS’!!!!
WHAT ABSOLUTELY ARROGANT STUPID AND FOOLISH BEHAVIOUR — and, rather than NOW stepping up to the place to CORRECT INjustice–they CONTINUE with the LIES and COVER-UPS—-and THEY are RESPONSIBLE for the GLOBAL EPIDEMIC!!!
let’s hold on a moment here…evidence is lacking indicating CFS / ME is contagious. I came down with it when I was 18. My brother and I got a nasty virus, he recovered from it, I developed CFS. I lived the next 5 years with my parents and brother and none of them “got it”. I recovered about 90% of my former health when I was 23. I lived together with my old girlfriend and one other friend for 3 years. None of them got it”. I am 42 now and have a wife and two children and none of then have “caught it”.
There may be subsets where CFS has a contagious element, I’m not denying that.
There will also be environmental reasons, or just mere coincidence as well.
I know I’m a broken record but I think for most ME/CFS sufferers the condition was triggered by a virus but is not maintained by a virus (“hit and run” theory).
I’m tired of the focus on viruses when so much research has been done over the last 15-20 years with very little consistent evidence of viral involvement. I think it is a serious distraction to progress. Just remember the retrovirus debacle.
Greg,
With regard to ME being contagious, I agree with you 100%. My ex-wife started suffering from fibromyalgia in 1977 and my downward spiral with ME started 8 years later in 1985.
About your idea to take drastic measures – brilliant. It’s time to ACT UP the only way our diseased bodies will allow us.
But of course, we’re not really sick and there’s nothing contagious. Don’t believe me? Just ask the CDC.
Find me on Facebook and let’s light this candle!
John
I wonder if ME/CFS is contagious in a kind of mild sense; i.e. some people are throwing off viruses such as herpesviruses that most people can handle, but sometimes you can’t so – it does show up from time in time in the family. It’s certainly not contagious, though, in the way that the flu or HIV or a bug like that is contagious. That would have shown up very quickly and it would have accelerated the search for a bug.
I wonder how many spouses come down with ME/CFS. I hear of it from time to time.
There does appear to be a pretty strong genetic predisposition to developing disorders like ME/CFS and Fibromyalgia, however.
What is going on here? It sounds manipulative. It seems to me that the outcomes might already be secretly plotted out. Having no experience with CFS/ME in order to be on the panel? What is this? It may be comparable to having a group of patients in any given clinic, come up with treatments for themselves as a group. And why is it secret? Either they do know something we don’t know or they want the outcome to fit their preconceived anticipated outcomes. Maybe they want to bully or brainwash? It doesn’t make sense to me, therefore, I really don’t know where to begin to intervene or interject.
I’m still trying to get more information, and I’ve been told that the Working Group roster and other info will be posted publicly – eventually.
I don’t really understand the logic of the P2P process, with any disease being evaluated by a group of non-experts, although I think it might work better for some diseases than others. I’m trying to develop more information on this point as well.
This is science? No, we don’t get science. We get politics. Secret politics.
What is wrong with these people! They are looking for answers so they decide to ask a bunch of people who know nothing about the subject?
They don’t want to be identified. They don’t want to be questioned. And they will not be answerable either, I am quite sure. The only thing they will do competently is to collect their unearned paychecks.
I couldn’t be more disgusted, absolutely disgusted.
Having read the article I am angry but having read the comments I am scared. I have suffered with ME & Fibromyalgia for 6+ years & recently my ex-partner was diagnosed with ME. We were thinking that this was coincidence but now I am afraid for my grandchildren.
If this disease is contagious how is it spread? Where do we go from here?
The outcome will be the same as the Nice guide-lines in Engeland. ME and CFS will be treated as a mental disorder with CBT. I’ll bet!
I came down with cfs 2 days after i got the coxackie virus, which my husband got too. 10 months later I’m still very sick and he has achy legs brought on by stress and exercise. He is now at 90pct and I’m at maybe 30pct (started out a step above bedridden). I too believe a virus must trigger something and leaves. Maybe there are clusters in families because they all got the same virus. And, our state of health/stress at the time determines our body’s response. 2 days before I got the virus I had surgery and 2 months before that I had a very difficult delivery, my body was completely rundown.
Hi Leslie,
How did you know it was Coxsackie virus at the time? I too have a couple of those strains but did not know at the time of onset. That is interesting re Dr. Chia’s work on enterovirus and coxsackie viruses.
Thanks.
Cort, I have shared the following far and wide. I hope it makes and impact.
More of the same? Jen explains the lack of transparency, which has us all wondering WHY? This seems status-quo when it comes to healthcare and our government. Years ago, while a member of ASHET (American Society of Healthcare Education and Training), the same thing occurred. Just after DRGs (developed to help classify medical diagnosis and tests for Medicare billing ) were instituted, a government panel discussed the role of HMOs and insurance capitation which eventually led to the conundrum of the healthcare delivery model that we have today. Not ONE doctor, nurse or other HCP was invited to this panel, it included reps from insurance carriers, politicians, et al, that had no interest in patient outcome. We all know what happened from there. How can we ever get it right without experts sitting on panels that make these decisions? Thirty years later and here we are, different day, but more of the same.
If were lucky maybe they will keep their findings a secret as well.
Michael
Ha, ha!
I’ve had ME/CFS for six years and everyone around me is still healthy.
Some subsets of ME/CFS may contagious, some may be not. I don’t believe anything anyone says about ME/CFS because it’s such an ill-defined illness that it’s very likely that your ME/CFS is very unlike my ME/CFS.
It’s wrong to say ME/CFS is not contagious, but it is also wrong to say ME/CFS is contagious. If we want to say the truth, we can only say “my subset of ME/CFS is not contagious.”
How many of those people were you sharing bodily fluids with?
My take on this is that I think the NIH initiative will ultimately be a good thing. I don’t like the fact that most ME/CFS experts will not be included. On the other hand that is a feature of the program; it’s not unique to ME/CFS.
I like the fact that ME/CFS appears to be only the second disorder that’s going through this program. That means that ME/CFS was the first disorder in the FDA Stakeholders program and the second program to do this one. I think the government is starting to wake up! Wanda Jones said more attention to being paid to ME/CFS at higher levels than ever before. Maybe this reflects that.
The lack of communication from CFSAC is just appalling, though. I thought the questions the panel is being asked to answer are good ones, but why does it take an FOIA to get that information? Given that they are good questions – why the secrecy? Why don’t we know who’s on the panel? I don’t get it at all.
It’s going to be interesting see what these non-ME/CFS experts come up with.
Good thing?
I think you need to wake up and smell the coffee. This is a dog and pony show. They already know the output of this study.
It’s said best here, in the following:
“If the IOM were to reach conclusions regarding ME/CFS other than the ones it arrived at in the Gulf War Illness report, upon which its findings regarding Gulf War Illness were largely based, that would, at best, be a major embarrassment and humiliation to the IOM and, at worst, could call into question the validity of its Gulf War Illness conclusions.”
http://thoughtsaboutme.com/2014/01/08/after-oig-dodges-charge-of-ioms-conflict-of-interest-meaningful-reply-demanded/
Firstly, Jennie uncovers yet another shameful act of duplicity by the very people who are supposed to be helping us, why is this blanketed in secrecy ? what are they hiding ? why are they trying to hide it ? Not just in the USA but worldwide, I live in the UK, believe me,it’s as bad as you’ve heard.But the UK will follow what happens in the states,as will other countries, we need to be aware of what “they” are trying to do and make our voices heard. My thanks to Jennie for making us aware.
Secondly, I too believe that we need to ACT UP, make a noise, mail your representatives, senators ,congressmen, members of parliament wherever you are.Remember, “they” tried to bury HIV too, they failed because patients acted up.
Thirdly, contagious and infectious are two different things, HIV is not contagious, but it IS infectious, don’t confuse the two things. As an example……….
“Estimates are needed in order to plan effective interventions. A recent paper, published in the Journal of Infectious Diseases (Hughes, Celum et al.), discussed by an editorial (Gray & Wawer) of the same issue, represents the latest attempt at estimating infectivity and its determinants for sub-Saharan Africa. The study was conducted on the back of a large randomized trial of HSV-2 suppression for prevention of HIV transmission between sero-discordant couples, and involved 3,293 couples at 14 sites in S and E Africa over a period of 24 months.
First the figures. Transmission per coital act was estimated at 0.0019 for male-to-female, and 0.001 for female-to-male. The major driver of transmission was HIV load in the infected partner: each log10 increment in viral load produced a 2.9 fold adjusted risk of transmission. Condom use reduced risk by 82%.”……….http://blogs.bmj.com/sti/2012/02/26/just-how-infectious-is-hiv/
Did you see the figures ? You are more likely to win the lottery than contract HIV off an infected person.
HIV is not easily transmissable , it’s not contagious, but it IS infectious, my view is that ME is infectious but not contagious.I would not deliberately donate my blood, but i would threaten to do so. I too worry for my children and grandchildren, the mother of my eldest daughter is dying from breast cancer, she is 53,my eldest brother has leukemia, my younger brother has prostate cancer.
We need to fight, we need to make our voices heard, Jennie Spotila is our Sherlock Holmes and I salute her.
Thanks Astro. Good point… HIV is not easily transmissible from men to women. I guess it was easily transmissable from men to men, because they were able to easily build a network of infected people who were sexual partners. Now it’s a different story. (Something else seems to be going on in Africa, I guess. (?))
Thank you for helping to point out the distinction between ‘contagious’ and ‘infectious,’ Astro. Below are dictionary definitions of the two to help with clarity. Verrrry sorry about the serious health situations in your family.
con·ta·gious
adjective
1.
capable of being transmitted by bodily contact with an infected person or object: contagious diseases.
2.
carrying or spreading a contagious disease.
Contagious, infectious are usually distinguished in technical medical use. CONTAGIOUS literally “communicable by contact,” describes a very easily transmitted disease as influenza or the common cold.
INFECTIOUS refers to a disease involving a microorganism that can be transmitted from one person to another only by a specific kind of contact; venereal diseases are usually infectious.
In nontechnical senses, contagious emphasizes the rapidity with which something spreads.
in·fec·tious
adjective
1.
communicable by infection, as from one person to another or from one part of the body to another: infectious diseases.
2.
causing or communicating infection.
infectious (ɪnˈfɛkʃəs)
— adj
1. Compare contagious (of a disease) capable of being transmitted
2. (of a disease) caused by microorganisms, such as bacteria, viruses, or protozoa
3. causing or transmitting infection
As we are aware, there are Specialists of INFECTIOUS DISEASES on the Expert/Research teams investigating ME/CFS. May they SOONEST get to these CRITICAL answers!!!
Thanks Cort and Ess, it’s an important distinction.
Sherlock Holmes? That is VERY high praise! Thank you. I am fortunate to have several Watsons, and they deserve credit as well.
Yay for the Watsons too Jennie !
I do worry that being in contact with people will cause them to get ME/CFS. People in my family have it. I’m concerned that my husband could contract it. And who knows when such a terrible thing might happen? Apparently people can be exposed for years before they too come down with it. Given all of the anecdotal evidence, I can’t believe at least some subsets aren’t infectious disease(s). I get it about not being contagious. Right, probably not. But the AIDS comparison is a good one.
Thank you, Jennie, for paying attention and bringing this secret P2P Working Group to our attention. If this is being done to slot us into CBT and GET like the English debacle, I think we need to have a “Roll on Washington.” Hospital beds, wheel chairs, etc. It’s hard to even think about the energy and money to do such a thing. We need help so badly. I’m not feeling very gratified thus far from writing and calling congress members and bureaucrats. Threatening to give blood might get us some attention, but really doing it… I’m not sure I want to live out that karma. Perhaps the threat alone would be enough to attract the attention we need.
I’m glad I’m not alone. Thanks to everyone who writes. Thanks to Cort for this ongoing forum.
I’ll say it again, CFS is not perpetuated by a virus. All the angst and scientific interest around viruses in CFS have got us nowhere in the last 20 years and will continue to get us nowhere.
Study after study has failed to find any convincing evidence of viral involvement.
It seems many of the CFS community get angry when people say viruses are not a perpetuating factor. And all sorts of conspiracies seem to exist around viral denialists.
The illness is a neuroimmune problem, triggered by viruses ,vacccinations etc. There needs to be much more focus on the neuroimmune problems that are causing this disease, rather than speculating on an elusive virus.
I’m sorry, but viruses are a total distraction and a very dangerous distraction. I want effort put into the neuroimmune issues, which if pinpointed could lead to targetted treatment.
I agree with you.
Time for some legal challenges…bombard them with FOI requests and then go to court for a court order to release all of the information. We should demand this much as taxpayers…the most transparent administration in history…what a bunch of bunk.
There is some strong evidence that ME is transmissible – not contagious like a flu, but transmissible especially in ongoing familiar contacts.
In fact there is a genetic disposition (the tests of one of my children confirmed this assumption). My children are suffering from ME in third generation. My mother suffered from mild ME and finally she was dying from two kinds of cancer. (There seems to be a connection between ME and developing cancer according to Dr. Byron Hyde`s statement and other experts`statements. Given that viruses can cause some cancers this will not be surprising! And given that many people with ME have familiy members who are suffering from cancer we must talk about infectious agents!)
Besides genetic disposition there is evidence for transmission. That`s what my family experienced. Each time one of us worsened the next felt ill or relapsed with ME. So you can see: falling ill or relapsing is not only due to genetic disposition!
It seems as if normally the (retro?-)viral pathogen is somehow closed in our body, but when the condition worsens our body is no longer able to keep the pathogen under control. Perhaps it is like in HIV: If the viral load is too large the patient will be much more contagious.
Therefore looking at the pathogens is no distraction. It is extremely important to know that ME can be transmissible, probably airborne and mostly only in ongoing familiar contacts. (Important to know – for instance – to protect healthy people!)
But as the ME epidemics have shown sometimes many people fell ill at the same time. We can argue from the epidemics that ME is an infectious disease. That`s actually alarming especially because the politics and medical authorities deny the infectious nature of this disease.
Probably environmental conditions (such as Organophosphates or vaccinations containing mercury derivates or Formaldehyde) also play a triggering role in epidemics (and in sporadic cases). But nonetheless transmission is no negligible factor.
Finallly I want to emphasize that contact with so-called healthy people is much more risky for ME patients as contrariwise – in consideration of all the opportunistic infections we can catch!
I think to stop threatening danger of psychiatric redefining and to change politics we need to pinpoint the transmissible character of ME.
How many years will we allow ourselves to be hoodwinked and placated. We have only ourselves to blame allowing this to continue. TIME TO ACT UP.
I’ve had cfs since 1990 and since then I have seen countless speculation and studies on viruses and cfs. Thats 23 years and nothing to show. The cfs community is obsessed with viruses. XMRV was a debacle. Some are still obsessed with ampligen despite its unconvincing trials.
I understand the interest in viruses given that most people’s cfs started with a virus
@ Matthias
Sorry, but it sounds like you`ve never read any of these viruse studies. And did you ever try Ampligen? Sounds like you`ve even never heard from patients who improved with this treatment.
To talk about `obsession´ concerning these subjects is irresponsible and unfair.
It`s a thought-terminating cliché!
Katharina
I believe in science not personal anecdote (my wife has positive things to say about homeopathy but I think its rubbish), and the science re: ampligen and cfs is poor.
I have a post graduate science degree and trust me I’ve read many of the studies.
I would be very happy to be proven wrong, and that CFS is perpetuated (as opposed to triggered) by one particular virus, and that viral treatments can then be found.
But after 23 years with this illness, and having witnessed many false dawn and disappointing studies, and having read of recent research into neuroimmunity and autoimmunity, I’m pretty confident CFS is not perpetuated by a virus – rather it is triggered by a virus that results in neuroimmune / autoimmune issues.
But frankly, i don’t care what its caused by – I just want the cause found!!!
A lot of personal informations for someone who claims not to believe in personal anecdotes! ;)))
Anyway – I believe in science too. In true science! And my belief in true science is very strong. The day we will know much more about this disease will not be as far away as it seems today.
I´m full of hope (most of the time!) – though living in a hell with my most severely affected children!
In ME there is reactivation of viruses, there is primarily no virus found what may be the cause. Why reactivate these viruses? I think that an chronic excessive response from the autonomic nervous system is responsible. The parasympathic nervous system is broken. But it is very difficult and many patiënts forget microorganism.
Back on topic……. http://thoughtsaboutme.com/2014/01/09/federal-lawsuit-filed-against-hhs-and-nih-relating-to-iom-study/ ……..
Corts next blog on the “virus ” question is worth reading too
I have read everyone’s comments & now am wondering about what you are saying about a virus being a pre-requisite to developing ME. I’ve always thought that my fibromyalgia & ME were caused by stress.
My life has been full of stress, from being badly parented then bullied at school to a life of self abuse then working too hard (I was juggling 3 different jobs when I finally just could not push myself to get up one morning, after months of physical pain & exhaustion) I’ve been thinking that the pressures on myself caused an “off switch” to trigger, protectively, so that I was forced to stop the pressure on my self. (Sorry if I’m going off subject here.)
Personally, I don’t think a virus is required to be come down with ME/CFS; however, some viruses that have been typically associated with ME/CFS such as herpesviruses can be reactivated by stress.
My situation followed a chemical exposure that I was unable to recover from. I think now viruses play a part in that my immune system has misplaced the on button.
It’s such a huge complicated illness.
🙁
This action simply validates even more the assertions of Donald Scott of the massive cover up of the CDC, HHS, NIH, MILITARY, FBI, of the development of biological weapons during WW2 to compete with Japan & Germany. Designed to maim not to kill. Then was tested in the US, Canada, an England by spraying weaponized Mycoplasm or infecting Mosquitoes with Mycoplasm and dropping millions over select cities in the three countries, over a period of years. This was Top Secret however It became known and he was called to testify before congress. We need to request help from Mr Scott to make this known. If the US made it , they know the antidote. Every thing the CDC NIH, FDA has done is to discredit anyone who comes close to uncovering their secret. Fear keeps everyone quiet. Examine the grip who has Gulf War Syndrome, (same as ME CFS), they got it from Sadams “gases” in the 1st Gulf War (we had provided to him in his war with Iran). If they got GWS (CFS) from bio weapons, it is likely you and I did too. I will join any group who wants to examine this closer. I will add the article I read to the next entry.
Donald W. Scott, MA, MSc
President – The Common Cause
Medical Research Foundation
190 Mountain Street, Suite 405
Sudbury, Ontario, Canada P3B 4G2
Article about WW2 and Donald Scott
http://www.salem-news.com/articles/march032013/neurosystemic-diseases-ds.php
Article about WW2 and Donald Scott
http://www.salem-news.com/articles/march032013/neurosystemic-diseases-ds.php
Why is elusiveness still being pursued when it comes to the treatment of how CFS/ME is accepted. Here’s a video from back in the day that explains the same thing: Epstein Barr Virus being found in several patients with CFS/ME:
http://www.youtube.com/watch?v=PUFsjhjCaOc&list=PL152940443D9A57C4