P2P: “Patients to Purgatory” or the Jury Model Stood on its Head

“They don’t know. They don’t know anything.”—Susan Maier about the P2P panel members

On January 27, 2014, the Institute of Medicine (“IOM”) held its first out of five meetings relating to the development of diagnostic criteria for ME/CFS. It was a two-day meeting, with half of the first day being open to the public. Several government officials gave reports during the open part of the meeting. Susan Maier, Deputy Director of the Office of Women’s Health of the Department of Health and Human Services, gave the NIH report on the so-called Pathways to Prevention (“P2P”) program currently underway relating to ME/CFS research—parallel to the IOM effort—which will culminate in about 12 months in a workshop in which an appointed panel will (1) receive the report of an evidence-based review/report by the Oregon Health and Science University  (“OHSU”) (under a task order from NIH), (2) listen to presentations of the government and experts and (3) then deliberate and write a report of recommendations to the NIH within 24 hours of the end of the workshop.

In response to a question from an IOM committee member, Susan Maier described the workshop as based on the “jury model” that requires the exclusion of any clinician or researcher who has any experience with ME/CFS  Here is what she said:

“It’s a jury model. You have the defense, you have the prosecution; they both know the case really well. They know the details, they know what’s going on, they know all the nuance, they know what’s going on in media. Your jury is sequestered. They don’t know. They don’t know anything. … The jury hears the evidence. And they make their decisions based on the evidence. That’s essentially the difference between the workshop speakers, the evidence report and the panelists.” [emphasis added]

Deep breath! So, NIH really believes that designing the P2P workshop to be analogous to a jury trial is a valid method. Experts and government officials with varying points of view will present their views at the workshop, which Susan Maier likened to the prosecution and defense in a trial. Then the P2P panel, made up—by design—of those with no expertise or prior research or opinions on ME/CFS AT ALL, will take the evidence report of OHSU and the comments of the presenters—the “prosecution” and the “defense”— and deliberate and issue their recommendations in writing within 24 hours (!)

I must say, when I heard Susan Maier give that explanation, with a completely straight face and an obvious expectation of everybody to consider this approach sane, I just about fell off my chair. I found myself shaking my head violently. I even uttered the word “Noooo!” under my breath.

I find it hard to capture in words the absurdity of this approach for what Susan Maier described as “focus[ing on the] improve[ment] of science.” Let me add: the improvement of science for an incredibly complex disease, not that I am advocating this model for any other disease. The jury in the American justice system exists in order to assess the facts, not develop or interpret the law.  The law is given to the jurors by the judge, who also serves as an impartial screener of the evidence presented by the parties for bias, relevance and many other factors. The outcomes of jury trials do not have any precedential value for future trials or the law.

In the P2P process, the jury model is stood on its head entirely.  There is no judge to explain to the P2P panel of non-ME/CFS experts what the “law” is or to screen the evidence presented by the OHSU or the presenters at the workshop.  Rather the panel is supposed to determine and confirm what the “law” is from what undoubtedly (or maybe hopefully) will be an abundance of highly technical information presented by OHSU in its evidence review.

This all happens in in an incredibly abbreviated period of time. As Susan Maier said, We have a enough content for a five-day meeting. We have to cram it into two days.” (emphasis added) Even juries in a trial get to deliberate for several days or even weeks and don’t have to write a detailed report in that time. The powers that be within NIH dragged their feet for 30 years—ignored us, harmed us, tried to sweep us under the rug—and now they can’t spare three additional days on a quality workshop? Not that even five days would be sufficient for a complex disease such as ME/CFS.

According to Susan Maier, the “goal of P2P is … to review the evidence.” This evidence will then be applied to all future government-sponsored research of ME/CFS. This is like asking a jury in a murder trial to listen to the evidence as presented by the prosecution and defense, unfiltered and unclarified by rulings or instructions from the judge, and to develop, within 24 hours, a set of definitions and criteria for what constitutes first degree murder, second degree murder, manslaughter and negligent homicide.  These will then be applied in all future murder trials.

This is the opposite of the scientific method! And talk about giving the jury model a bad name! Albert Einstein and Clarence Darrow would turn over in their graves.

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58 Responses to P2P: “Patients to Purgatory” or the Jury Model Stood on its Head

  1. Laurel says:

    This is insanity in its finest form.

  2. Pam A. says:

    Hi, Jeanette. Thanks for this update. More disheartening news for us. I’m wondering, where do we go from here? Since it seems that both the IOM panel and the P2P are a fait accompli, do we simply wait a year and cross our fingers? Am I missing something?

    • We fight this all the way. Every way we can.

      • kraftycatcreations says:

        This is all so upsetting! I have been spreading the word about ME lately in an effort to get more people to understand what it is to have it. In this way, I have started my own little battle against ignorance of this illness. I feel it will be a war to get any good outcome for the million plus suffering in the US. Time to start putting on more gear.

  3. The criminality of the neglect for 30 years of patients must have automatically triggered the phrase “jury trial” in her mind. Nuts by any reference.

  4. Kathy D. says:

    This is, in a word, “nuts.” This is in no way like a jury trial. This is a proceeding that will affect up to a million people, and perhaps, more, as it will impact on what other governments will do about ME/CFS definitions, diagnoses, tests, treatments.
    Was an “impartial jury” set up to define and decide treatments for diabetes? Cancer? Heart disease?
    Additionally, this will not only affect ME/CFS research, but treatment, access to governmental and private health insurance coverage, state and federal disability claims, qualification for other governmental benefits and services.
    Would someone with ME/CFS who has a limited income be denied food stamps because local officials don’t believe their health claim is real? The extent of how this committee’s findings could harm people is endless.
    Yes! Clarence Darrow and Albert Einstein would be shocked and outraged by this outlook.
    We do have to keep challenging this, and thanks to you, Jeanette, who is doing so much and providing leadership and legal expertise in this “movement,” which is how I consider this.

  5. Rhonda Ovist says:

    This is not science. Nowhere are the controls to insure against bias by this non-expert panel. Given the general lack of knowledge and huge amount of stigma against Cfs/me within and outside the medical domain, this method almost guarantees a panel biased against the disease they are supposed be developing diagnostic criteria for. This method also ignores the fact that Cfs/me is not on trial. Who is the prosecutor? The defense? Real science, particularly peer reviewed science, requires real research, replicable results and a peer review of experts. This method being used in this IOM review is not science.
    God help us.
    I recommend that anyone with the ability, energy and resources investigate the money trail behind this effort. The push away from medical, and not so subtle push to psychiatric, diagnosis and treatment makes no sense given the huge advances in recent medical research and the growing evidence that challenges, if not contradicts, the psychiatric/psychological approach. There must be huge financial pressures on government agencies, most likely mid-high bureaucrat level ( if I read right that this IOM process goes against the charge set by legislature). As a rule, I don’t tend to assume there is some type of conspiracy going on; but as a trained social scientist, and student of the corporatization of American Politics and government, I am always suspicious of otherwise illogical behavior by Government agencies.
    As someone who has lost most of what I called my life to CFS/ME and other immune-related problems, I am truly frightened by this IOM process. How will the results of this “ignorant jury” system impact Social Security, which now does recognize CFS/ME as a horrible, disabling illness (to paraphrase my SS award letter? How about my private disability insurance, which has made my life quite difficult already, and is always looking for a way to end my benefits. I understand that the review may lead to a positive end recognizing this disease as the severe medical condition it is. But if it does, it will still not be a product of real science. And without good, valid and reliable science, we are lost.

  6. Sick and Tired says:

    So basically the patients are pretty much in front of a jury to see if they are worthy for treatment.

  7. Ess says:

    Pathway 2 Prevention–‘Prevention of TRUTH re the biological disease of ME/CFS AND Prevention to proper medical treatment–THAT is the MISguided Pathway here’– that aims to condemn Patients to Purgatory — We’re Gonna Have a REV-O-LU-TION — yaa-aaa-aaaa-aaaaa — POWER to Patients !!!

    I am going to add my comments here from a previous posting.
    The P2P is the JURY ?? This is like Alice in Wonderland going down the Rabbit Hole into a verrrry strange DISTORTED NON-SENSICAL world with the MADD HATTER and CHESHIRE CAT charged with being on the IoM committee as experts–i.e., the NON-experts in ME/CFS–as well those charged with ‘writing’ the P2P report–tasked to complete their written report within 24 hours of the end of the IoM committee meetings.

    Ooohh, now we’ll add the (friendly) Non-Sensical Queen of Hearts to the cast of characters. Wellllll, spokes person Susan Maier certainly had a ‘jury’ fairy tale from NUTSVILLE to ‘sell.’ Curious and curiouser . . . WHO do they really think will BUY this–oooops; doesn’t matter–they don’t care; makes no never mind to ‘them’–they are just putting on some kind of a ‘kooky’ ad performance ‘show’ — we ALL KNOW that there is a DETRIMENTAL ‘to patients’ PREdetermned OUTCOME of the ‘book review’–literature review of evidenced-based B.S.–that information ‘allowed for the ‘review” IS BIASED, MISleading, INaccurate and OUTdated–USED and SET UP because this NONSENSE suits the agenda of all the HHS deparments involved. Talk about back-door DECEITFUL POLITICS IN MEDICINE–ohhh, yessss, and INsanity!!

    Otherwise, there would be REAL effort, REAL evidence ‘allowed’ and BONAFIDE concern and caring for patients to CORRECT the TRAVESTY that has been dealt to us for 30 YEARS. WAIT–CORRECTION–and MORE to the point–there would be NO IoM contract and committee; NO P2P–the VOICE and EXPERTISE of the ME/CFS Experts and Researchers would be WELCOME . . . and we’d proceed from there with the Experts!!! NOW–which of these two alternatives make sense?? RIGHT–we ARE dealing with LUNATICS!! This, folks, is verrrry scary to have ‘characters’ and personalities like this in positions of power–to USE that power AGAINST us.

    These leaders and puppets ‘at the core’ of the PERSECUTION AGAINST ME/CFS patients appear to have NO conscience–this is SOCIOPATHIC behaviour AND BULLYING AGAINST very ILL citizens . . . Not to mention CRIMINAL acts that we know about–and those that are being investigated!!! FOR SHAME!!!! Ohhh, yesss, and ‘they’ ‘use’ seemingly ‘innocent pawns’ ‘set’ hard at work on RIDICULOUS PROJECTS to get their DIRTY WORK done.

    POWER to Patients—We’re Gonna Have a REV-O-LU-TION — yaaa–aaa-aaaa-aaaaa 🙂 🙂 🙂

  8. Ess says:

    P.S. MALtreatment of severely ILL citizens such as in this 30-year ME/CFS DEBACLE is A SHAMEFUL TRAVESTY and CRIME AGAINST HUMANITY!!! We want it FIXED and we want it fixed NOW!!! We’re Gonna Have a REV-O-LU-TION — yaaa–aaa-aaaa-aaaaa !!

  9. susanna says:

    This circus may as well be televised, like a game show? Who wins from this fine mixture of prejudices that will no doubt be on show!

  10. TheGodofPleasure says:

    Thanks again Jeannette, for the work that you do in order to highlight this madness.
    I’m not sure how much of what they are doing is rooted in arrogance and hubris and how much of it is deliberately nefarious. Whichever it is, they are not helping the situation.
    However, on a more optimistic note, we mustn’t lose sight of the fact that whilst the governments in the U.S. and U.K. might want to shut down any debate on the origins of M.E., there are researchers all over the world who’s findings are beginning to coalesce and thus make it very difficult to deny the true nature of this disease. I’m sure that the emergence of reliable biomarkers is not far away now.
    Our task must therefore be to ensure that real science is allowed prevail in this maelstrom of politics.

    • Indeed and thanks for the reminder, which is an important one. Trying to keep up with all the shenanigans, I don’t always point out the good stuff enough. So, thanks for that!

    • Libby Boone says:

      I often wonder, God of Pleasure, how much our sincere clinicians and researchers have to spend their time and efforts struggling against the labyrinthine politics of the USA and the UK governments, rather than getting on with their research and efforts to find treatments. It is so utterly ridiculous, in every way, but that is the kind of governments we have.

      Great screen name, by the way.

    • Ren says:

      The following might also help “truth” survive the IOM process:
      “National Academies committees strive for consensus, but on rare occasion–despite extensive deliberations–one or more committee members may not concur with the views of the majority. Matters of disagreement should be addressed forthrightly in the report. As a final recourse, a committee member may choose to prepare a brief dissent (no more than 5,000 words) succinctly describing the issues of contention and the arguments in support of the minority view. This statement should be included as an appendix….” http://www.nationalacademies.org/xpedio/groups/nasite/documents/webpage/na_067076.pdf

      • Ren says:

        Re above, I should have written *truth* (for emphasis) – scratch the ” “, please.

      • Even if all the experts disagree with the majority of non-expert, what impact will a 5000-word dissent have? I am afraid the answer is none.

        • Ren says:

          I believe one (or more, especially) dessenting members who maintain truth are better than a series of untruths with no dissenting views. A dissenting view(s) will likely gain some media coverage, as well as encourage ongoing dialogue and promote at least some sliver of independent thought and/or civil disobedience within the medical/scientific community. I believe a dissenting opinion(s) is also important for morale within the neuro-immune community. I believe the possibility exists that certain medical and government professionals who have knowingly caused harm to patients and concealed scientific evidence of such harm could eventually be held accountable, and so I believe this could be an important historical document as well. I believe some revelation of truth, no matter how small, can have a positive effect in ways that we can’t yet imagine.

          • I hear what you are saying, but I am nowhere near resigned that the process will go forward. In my mind, it’s much too early to talk about dissenting opinions. I am still very busy fighting the whole thing entirely and stopping it. We have more than a year a to do it.

            The stakes couldn’t be higher. We have everything to lose.

  11. Anne Keith says:

    The DHHS is going to give those who know nothing of this illness 2 days of unfiltered (and un-fact-checked) information, then 24 hours to decide what is “right” and prepare a statement, then follow that statement as law for years to come? I struggle to think of anything more stupid or non-productive… Perhaps they should just cut out the 2 days for information, and give them 20 minutes to do a representative finger painting of what they guess ME/CFS is. I can’t imagine that would cause much degradation of the final product and just think of the cost savings!

  12. Kathy D. says:

    Cheers to those researchers and doctors around the world who are doing the hard work of trying to find causes and biomarkers of this mysterious disease. I can’t wait to see real findings of this dogged research.

  13. Anonymous says:

    A review of the literature is actually a necessary preliminary step to all research, and must be included in published articles and research grant applications. But a lit review alone only provides an overview of the research findings that have already been completed. Alone it is very limited in its usefulness. For one thing, not all research is equal. If you have ever read published research papers, you’ll notice that the authors will usually include some kind of critical analysis of previous research, including suggestions of limitations of, bias in, or alternative explanations for, precious findings. In other words, a review of the literature is a jumping off point for further research, not government and
    Medical policy. Another option is a meta analysis, which uses recognized research methods to scientifically review and compare previous research. A meta analysis would take far more time than 24 hours – it requires a number of qualitative and quantitative scientific tests and careful final analysis that is then reviewed by EXPERT peers before the findings are considered ready for public release. Even then, it would be inappropriate to immediately move to translate those findings into policy – there must still be time for other researchers to we if the findings are reliable (in other words, are the research findings replicable? A test of reliability is whether or not other researchers using the same methods one up with the same results. If results are not relicable, there may be errors or Bias in the original research) and validity (does the research, including variables used, actually represent what the researchers say they do?

    So in conclusion, a lit review is a necessary component for all research (how can we ask good questions if we have no idea of what has preceded?), it is hardly an adequate research method in and of itself.

    • “So in conclusion, a lit review is a necessary component for all research …,it is hardly an adequate research method in and of itself.”

      Especially when the literature is so skewed towards the psychological because, wait for it, that’s pretty much all NIH has funded so far and they are very aware of that. Plus, as you say, the review and recommendations should be done by ME/CFS experts. Not experts in their (other) field no matter how competent they are with respect to their non-ME/CFS expertise.

      In other words: funding only unscientific “science” and then performing a literature review of the non-science … Nobody can tell me that that is a good-faith effort.

      • Rhonda Ovist says:

        Yes. Although a scientific literature review would no be limited to only research funded by the NIH, CDC or any single agency. On the contrary, a scientific literature review would include all related research, in the US and internationally. It would include recent findings regarding CFS as an immune, if not autoimmune disorder, and evidence that CFS patients experiencing post exertion fatigue, challenging many graduated exercise “treatments” and one-day physical tests that do not measure post-exercise effects. It would include the Belgium research and the many non-psychological/psychiatric research that has occurred. Is it clear that the current IOM effort will limit it’s reviewed research to that funded by the NIH?
        I share these comments to further support your critique of the current “non expert” review, by arguing that it lacks scientific reliability or validity, and thus does not have the multiple levels of control to catch human bias and error that scientific methods provide. (There is no such thing as bias free – as members of any given culture, we are biased by the meanings and ideologies we exist in). Unfortunately, we are clearly dealing with huge biases and little check against them.
        Btw way, I love some of the examples above of all the types of medical conditions that have not had to be viewed by a jury of non peers before their diseases were taken seriously.
        I pray that actual scientists, researchers, who study CFS/ME, will step up and call in the support of their colleagues to demand that the IOM follow fundamental scientific methods and in doing so, protect us (CFS/ME patients) from most blatant forms of political or financial bias. Science may have its limits, but it is by far better than the whims of uninformed bureaucrats and the many “lobbyist” pulling strings in the back room.

        • But how much biomedial research (whether NIH or int’l) has been replicated? Hardly any. Psych studies, however, have been repeated ad nauseam. That is the problem with an evidence-based approach to an understudied disease such as ours, especially when the quacks have ruled the field for decades and the true experts are pretty much silenced. And having “research” from say the UK included scares the you know what out of me.

          And especially with a lot of exciting new stuff coming out right now, it’s going to be painful to watch that be excluded from the review b/c of lack of replication.

          • Rhonda Ovist says:

            Let me clarify I didn’t say science was better than nothing. And I don’t like the feeling that we are arguing against each other My whole point is that the IOM process is not science, nor is it using scientific method. And anything being done under the auspices of Government medical (Scientific) agencies should reflect the best of what science can do. This jury system seems to me to fall very short of that objective. Also if you read my comments, you will see that I argue that good science is highly critical and rests on peer review of EXPERTs. The jury system does not. I think the jury system approach is more like a game of Survivor than science or medicine
            I definitely understand your concerns. I’m freaked out.
            As for the valid concern for a lack of replicable science in medical as opposed to government funded psych/psych research, it is a concern. I am not familiar with NIH funded research on our illness, but Im sure that it is as biased towards treating CFS/ME as a mental disease as opposed to medical as you say. But I do know that there has been considerable EXPERT medical research that critiques the psych focused research heavily, especially on the grounds of sampling, reliability and validity
            I suspect that this current situation with the NIH follows a similar path as what we have seen in the most recent revision of the DSM that has essentially made it possible to define anybody mentally ill. The insurance and pharmaceutical industries have a great deal to gain by treating as many disorders as mental as opposed to medical. Which is why we must try to find and follow the money.
            I still believe that medical researchers, and those who believe in good science would find the IOM process outrageous, and if we could some how harness their understanding of good versus bad methods and direct it towards a full critique of this NIH plan, it would certainly help
            And please know, I am truly and thoroughly with you in your opposition to the NIH and IOM. I am simply trying to write my own concerns, relying on what I know about research methods as means of seeing how inadequate this lot review jury set up really is.
            Thank you very much for sharing information about this process with your followers and others. It is difficult enough to get up everyday and live with this disease without giving up. But when I read about the many efforts to make my life worse not better, I begin to wonder if it is worth it.
            I hope you will see me as an ally, not an opponent.

            • Rhonda, definitely seeing you as an ally. Really sorry if I gave you another impression. We are on the same page: we need solid science. IOM and P2P are the opposite. The experts feel the same way. Now we just have to stop the craziness.

              • Anonymous says:

                Yeah! I really admire your work and tenacity We share the great loss of a career and future we worked so very hard to get and you inspire me by your unrelenting efforts advocating for CFS/ME

        • And I think I have to disagree that any “science” is better than none. Just like I don’t believe that any media coverage is better than none.

  14. This is so much nonsence. How can people take notice of this

  15. Mary says:

    Does anyone know what else the “P2P initiative has done? The name, Pathways to Prevention, sounds more appropriate to the topic of, say, stopping kids from smoking cigarettes to prevent lung cancer. And then the “jury” of lay people might be a LITTLE more appropriate, because we are veering into social science rather than hard science, as well as perhaps brainstorming ideas for public policy. How do you “prevent” MS?

    FWIW, the scholarly literature (I.e., refereed journal articles) on this disease is bifurcated – two completely separate paths. There actually ARE as many articles in the biological side, but they are in different disciplines. Generally, neither side references the other. If they are given a lot of articles in the psychological side, and just a few from the biomedical, they may conclude that the biomedical is in it’s infancy when it actually is not.

    The two places they intersect are in Lenny Jason’s work, which is sometimes explicitly about that intersection, and in work having to do with “stress”.

    There really is a “judge” here – whoever makes the decisions about what the “jury” sees.

    As for “impartiality,” Jason’s work makes it pretty clear that “Chronic Fatigue Syndrome” as a name subliminally erodes impartiality – so the jury will be biased without realizing it is – and there is a long history of legal works on the problems inherent in the biases of juries.

    However, that a representative of NIH could have said this with a straight face ought to be of concern to scientists everywhere.

    • Mary, those were my thoughts exactly. Just couldn’t formulate them.

    • justinreilly says:

      Really good points, Mary. What do ‘pathways to prevention’ have to do with this process as they are applying it to ME? Nothing obviously.

      Additionally, according to NIH, this process is suited for “generally uncontroversial” topics. ME obviously doesn’t qualify for that one either.

      Certainly agree that a ‘jury’ with some non-scientists on it and noone who knows anything about ME is wildly inappropriate for this task. Especially now that NIH is admitting that the ‘jury’s’ ‘verdict’ will lay the basis for a new redefinition effort!

      Regarding juries: in civil cases there is no right to a jury. Judges will deny requests for a jury if there is material that will be over the heads of the jury such as substantial scientific evidence. Further, it is recognized that even judges are not competent to understand some topics well enough to rule on them. This is why we have a variety of specialized state and federal courts such as tax courts and water rights courts.

      The whole thing is crazy.

  16. Very poignant about the judge!

    The only other disease having home through P2P is PCOS.

  17. Ess says:

    P2P–Pathways to Prevention–And, perhaps, with this title they are UNwittingly alluding to the FACT that ME/CFS has — over the 30 years (and more) — and IS spreading. THAT is an other reason why the ME/CFS Experts and Researchers have such grave concern. Ignorning and declaring patients as ‘nuts’ has ALLOWED this to happen . . .

  18. Good letter. Sounds like a conflict of interest. Remember the jury is being PAID OFF.

  19. Kathy D. says:

    I agree that any science is better than none. What passes for “science” is astounding. Is a study in Britain, which finds ME/CFS sufferers benefit from graduated exercise and CBT “science”? Who did the testing? How sick were the people studied? Were they able/not able to work? Homebound partially or mostly? What were their symptoms? How did they do with these two “therapies?” What other treatments did they have? What medications were they taking? Did they have assistance at home with their daily life or not?
    All of this would have to be answered with these so-called findings.
    This IOM committee could come up with the same conclusions and recommendations, a disaster for us. How would that be a scientific evaluation? Especially because many people on the committee have no experience with this disease.

  20. The Walking Dead says:

    Jeannette thank you for all you do I know how taxing it is, stress is debilitating. Great article by Tuller. Would like to know who had the power to take that down. We need media coverage, a healthy spokesperson, and to exchange phone numbers to start talking, trouble shooting, and brainstorming how to get media coverage. Im tired of being bullied by the FDA, CDC, and NIH. Are the people at IOM being told ME/CFS patients fail the two day stress test? There’s nothing psychological about that, that’s all physical illness. I think this might be the time to reach out to a certain celebrity for help. If we could do this it might make news. Is anybody up for a phone list? We have got to think out of the box here.

  21. The Walking Dead says:

    I was contacted to speak at the CFSAC meeting in March, and they are only allowing a 3 minute speaking time. I wonder why the decreased time for this make up meeting? Anybody else?

  22. Ess says:

    Sooo, Ms. Maier, ‘Jury-style’ for the ME/CFSers, eh. Let us get this straight–we, people/citizens/patients suffering with the disease of ME/CFS are in court–charged and put on trial with having the disease of ME/CFS. The JURY will look at the BIASED, OLD, OUTdated, MISinformation put together for the JURY’s review–and we, ME/CFSers will be sentenced accordingly–to a life in ‘continued’ purgatory for having ME/CFS.
    Do you even hear what you are saying, Ms. Maier? QUITE a song and dance performance that you were set to!! AND a load of CRAP!! It defies intelligence. Perhaps you have been down the rabbit hole with Cheshire Cat and the Madd Hatter.

  23. Kathy D. says:

    My ME/CFS brain is working overtime; I meant to say that I disagree with the point that any science is better than none. Scientific studies can really be non-science and results skewed or interpreted to bolster particular viewpoints, as the British study which promoted CBT and GE.
    One can find statistics that bolster many arguments. It’s important to study what the research concludes and examine everything about it, including who is doing it and what they hope to conclude and who is funding it, too.

  24. About the PACE trial in the UK that was supposed to show that Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) in combination (CBT/GET) make patients with “CFS/ME” better – who did it? British psychiatrists. The lead author was Peter D. White, who runs the CFS program in his psychiatry clinic at St. Bartholomew’s Hospital in London.

    White is ALSO the Chief Medical Officer for 2 insurance companies, Scottish Provident and Swiss RE (the latter is a multinational re-insurance company). Under his tenure at Scottish Provident, clients have been denied disability payments because they “refused to” complete a ten-week program of CBT/GET. Being physically unable to continue is classified as “refusing to continue” in this particular belief system.

    The prescription of CBT/GET is based on the theory that patients with “CFS/ME” have “inappropriate illness beliefs.” They truly believe they have a biomedical illness that has kept them in bed or generally inactive – but they don’t. What LOOKS like illness is really deconditioning brought about by their inactivity. Hence the two-edged sword – while CBT is teaching them they are not REALLY sick, graded exercise reinforces their new outlook by getting them active again so their new beliefs are reinforced.

    The British psychiatrists use what is called the “Oxford” definition of ” CFS/ME” (their term), which allows the inclusion of patients with both major and minor psychiatric disorders, but excludes patients with physical ailments that could explain “fatigue.” British psychiatrist Simon Wessely at King’s College, London, one if the chief architects of this viewpoint, once told me I could not be diagnosed with CFS in his clinic because I have both Hashimoto’s hypothyroidism and NMH/POTS. The Oxford definition ends up mainly diagnosing patients with depression as having CFS. And, of course (because they also believe it is really the old diagnosis of “neurasthenia,” aka “the vapors” or “a nervous disorder”), they consider it yo be almost entirely an affliction of women, tho they include veterans with GWI as neurasthenia, too – as was the case in WWI. So men who have “failed” in that most manly of duties – war – also count, but mostly they diagnose it in women.

    These beliefs (excuse me, “theories”) are bolstered by thousands of studies of patients in their psychological practices – so it is called “evidence-based,” though the evidence on which it is based is from psychiatric practices, and most likely the majority of patients so diagnosed have major melancholic depression (which is exclusionary under Fukuda 1994 – although the Reeves version of Fukuda, which us the way the current “CDC CFS population study” was diagnosed, also includes depressed patients.

    Thus, in one of life’s little ironies, when it comes to CFS and M.E., the phrase “evidence-based” means it was used in a psychiatric hospital where, by definition, the evidence is highly prejudiced, violates CDC’s own formal definition of CFS (Fukuda 1994), and nothing can really be proved or disproved – it is all based on theories about what patient’s “believe.”

    With all of this doctoring of the data sets, not to mention the way it is bandied about, you would imagine the “PACE” study by White et al was a success – but it was actually a failure. They originally were going to use activity monitors to show increases in activity – they discarded that in the middle of the study, and have yet to explain why. Furthermore, they ended up moving the goalposts – the same level of disability that pronounced you sick but high-functioning in the beginning got you in the “cured” box at the end. (Tom Kindlon of Ireland has exposed these and other errors and publicly asked for an explanation and to see the actual data, but has been refused several times – n.b., all you Brits out there, that was your taxes at work, to the tune of £6 million, but outside researchers have been denied access to the data set.)

    For those of us in the U.S., all this is made much more interesting by Peter White’s role as chair of the committee to evaluate the CDC’s 5-year plan for CFS in 2009 – and CDC’s website, which focuses heavily on CBT/GET as appropriate treatments for CFS, even links to White’s psychiatry practice at St. Bart’s in London to show doctors how to use CBT/GET. White did not disclose his executive position with two insurance companies on his disclosure statement filed when he chaired the committee – he wrote that he was not paid to chair the committee, so therefore he had no conflicts of interest. Um, no, that’s not how that works – but apparently nobody cares.

    In 2012 at a CFSAC meeting, Elizabeth Unger was asked if she could get rid of the recommendation for CBT/GET on the CDC’s website, and she flatly refused, saying it was based on “science.” Hmm. Apparently the same view of science that leads you to pick amateurs in a “jury” to decide what to do about the … Whatever they call my disease…. Is the basis of CBT/GET.

    But that’s what we’re up against. Hmmm. Who benefits?

    • I hope everybody will read this comment by Mary! Thank you, Mary, for laying it out to eloquently. There really is no way that anything evidence-based could do anything but harm to patients. That’s why giving in and hoping for the best is not an option.

      • The Walking Dead says:

        Jeannette, I agree with Mary as you do. It is medical malpractice to recommend treatment (GET) without first doing a CPET to see if the patient can tolerate (GET). Im using my 3 minutes to talk about this at the next meeting, because I think its key. The CPET shows profound illness, making GET not appropriate, and certainly not a cognitive issue. Pushing/demanding for the CPET is a win win, even though it will be hard on us. We need to bring attention to these agencies that continue to bully us.

    • Ess says:

      Peter White–UK psychiatrist–knee-deep and in cahoots with Wessely–check. Now to the
      verrry interesting info–thank you, Mary–that Peter White chairs the committee to evaluate the U.S. CDC’s 5-year plan for CFS (starting in 2009)–and CDC’s website LINKS to White’s psychiatry practice in London. I see! AND Dr. WHITE did NOT disclose his executive position with TWO INSURANCE COMPANIES. WHAT ??!!!! I see! BIAS and CONFLICT OF INTEREST—-insurance companies, insurance companies . . . This EVIDENCE is ADDING to the picture of shenanigans and WRONGful doings ! Thank you, Mary, for EXposing this!!

      Pacing — PACE study . . .
      In fact, it is a ‘no-brainer’ that that is how we have learned ‘ourselves’ to ‘exist’. In other words–we cannot carry on a normal life with NO ENERGY, etc., etc. with ME/CFS; our level of functioning is substantially reduced/limited in all facets of daily life–and if we try to do something we must do it in very small increments and then rest–soooo, someone–Psychiatrist Peter White–officially labelled a PACING study !!! WOW–genius. AND claims PACING as a cure for ME/CFS. Ohhh, my–another ‘crazy’ fairy tale–heaped with causing harm to patients and financial benefit to self. Do ‘these’ psychiatrists find themselves EXEMPT from the oath ‘DO NO HARM’ ?

      Larger increments of exertion–NOT just exercise–equals PEM or CRASH. Building up does NOT happen with ‘barely exisiting’ and ‘pacing’–more pushing worsens the symptoms and can worsen the disease itself. We need a scientific FIX that gets to the root of the disease; not this NONsense–that describes a ‘strategy’ to merely exist.
      I have read a number of books on ME/CFS–only to find that the info presented was ‘gathered’ from ‘other sources’–and this equals a lot of MISinformation–written as FACT!!! Evidence-based books . . . Strategy for IoM committee . . .

      You are right, Jeannette–altho the IoM committee has started up–hoping for the best is NOT an option–to our detriment. 😦 As Ren has mentioned above–perhaps there will be those compelled to speak up with the ‘truths’ to help correct the WRONGS done over 30 years to a verrrry ILL population of ME/CFS patients/people/citizens. We must keep speaking up and fighting back all the way!!!

    • justinreilly says:

      Thank you for this excellent post, Mary!

  25. Ess says:

    And now–NEXT question coming up — UK Dr. Peter White’s—psychiatric and insurance affiliations (thank you, Mary)—as above–AND Dr. Peter White’s chairing of the U.S. CDC’s five-year plan for CFS (starting in 2009)–AND Dr. Peter White’s holding executive positions — with TWO INSURANCE companies (a FACT he did NOT disclose)—DOES DR. PETER WHITE, UK PSYCHIATRIST ALSO tie-into the W.H.O.– WORLD HEALTH ORGANIZATION as an influencial source/resource regarding ME/CFS–a BIOlogical disease–last seen in W.H.O as ‘neurological’ ???

    A further question—WHY does the U.S.A. have an UK PSYCHIATRIST chairing its CDC–Centre for Diseases Control–for the US five-year plan for CFS — ME/CFS — a BIOLOGICAL disease. Dr. Peter White is NOT an expert on ME/CFS; he deals in psychobabble.

    Curious and curiouser.

  26. Sure I’ll let you review my new work, I mean how could I not benefit from that?

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