Accurate and Precise

This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, so there are some differences between the spoken and written versions. I also submitted a much longer version with more details and references to the Public Access Folder. Update January 31, 2014: Video of my talk has been posted.

My name is Jennifer Spotila and I have been disabled by ME/CFS for more than nineteen years. I’ve been involved in advocacy for most of that time, including past service on the CFIDS Association Board, and appointment to the FDA’s Patient Representative Program. I write about politics and other ME/CFS issues at occupycfs.com. My perspective on this IOM study is informed by all of that experience, and I believe the one thing you must keep in mind throughout this study is to be as accurate and precise as you can in order to create sensitive and specific diagnostic criteria.

The Challenge

You are facing an enormous challenge, the result of decades of inaccuracy and imprecision in the definition and diagnosis of our disease.

Multiple names and definitions have been used in the last 30 years, and you should go back as far as the 1950’s to examine the descriptions and definitions of ME. Each definition carries with it a rationale, an associated description of the disease, and a set of limitations. Prevalence rates vary because each definition draws a different circle around – or within – a patient population.

Another challenge is that there are no gold standard biomarkers for the heterogeneous Fukuda population. Despite that, we are very close to establishing one or more diagnostic marker, and a number of you have been responsible for that important research. But the breadth and weaknesses of the case definitions have been a huge obstacle to achieving this.

Finally, as you no doubt realize already, there are competing schools of thought on case definition. Does the mixed bag of definitions describe one disease or more than one disease? How do we identify a more homogenous cohort? What should we call it? Who is competent to diagnose it? We do not agree on the answers to those questions because there are no easy answers.

Potential Pitfalls

As in any controversial subject, there are potential pitfalls that could complicate your work.

First and foremost is the fatigue paradigm. Severe fatigue lasting longer than six months is an extremely common symptom experienced by 4-5% of the general population. One study of newly diagnosed MS patients found that nearly 30% had been diagnosed with severe fatigue or CFS in the three years prior to the MS diagnosis. Because it is based on fatigue, the Fukuda definition has been used as a wastebasket for people with unexplained fatigue, consigning them to medical purgatory when they may have more treatable conditions.

It might help to draw a comparison to chronic pain. While pain conditions are researched across diseases to identify common mechanisms and treatments, we do not define and diagnose them that way. We do not diagnose fibromyalgia, vulvodynia, and migraines as one disease that is subtyped based on where the pain is located in the body because chronic pain is simply too common a symptom. I believe the same is true for the fatigue paradigm. Severe fatigue is simply too common a problem to form the basis of an accurate and precise case definition, regardless of how you try to slice it into subtypes.

Second, as Charmian pointed out, it is imperative to recognize which definitions and exclusionary conditions were used in each research study. If you do not take this into account, you will not be able to sort through the evidence with any resulting clarity.

Third, I believe it would be a mistake to lose sight of the impacts your report will have in the real world. As Lori and Pat have said, you will have an impact on research and clinical trials. You will have an impact on policy. You will have an impact on clinical care. The stakes are very high, but there is a solution.

Accurate and Precise

I believe it is possible to create diagnostic criteria that is both sensitive and specific for ME/CFS. To do so, you will need to be as accurate and precise as possible.

Start by setting aside the fatigue umbrella, because severe chronic fatigue is common to many diseases, and should not be used as the foundation of a precise case definition. Instead, focus on the core symptoms of disease. Across multiple studies and surveys, post-exertional malaise – not fatigue – has emerged as the key and most disabling feature of this disease. PEM is an exacerbation of multiple symptoms after mental or physical activity, and can be measured through both self-report instruments and objective biological tests. It is also notable for its use in distinguishing between people with ME/CFS and those with major depressive disorder and other illnesses with a fatigue component. Another core symptom identified in the research is cognitive impairment, particularly memory and concentration problems. Unrefreshing sleep and autonomic symptoms also rise to the top. There are many other symptoms as well, but your diagnostic criteria will be more meaningful if you focus on the core features.

Another approach that will help you succeed is to use frequency and severity thresholds, in addition to a list of symptoms, to identify a more precisely defined patient population. In one study, 34% of healthy controls reported at least 4 out of 8 Fukuda secondary symptoms. When higher cutoff thresholds for frequency and severity measures were used, that number dropped to 5%. If you combine a core symptom set with thresholds for frequency and severity of those symptoms, I believe you will be able to establish accurate diagnostic criteria that have high sensitivity and specificity.

Precision is the most important tool at your disposal, and yet it will not remove all ambiguity and uncertainty because there is so much we do not know about this disease. Three hundred years ago, cancer could only be diagnosed when it advanced to externally palpable tumors. The definition of cancer has evolved from the most severe and easily detected form of the disease to the sophisticated detection and subtyping methods of today.

Your case definition is part of an iterative process, like all case definitions. Most criteria broaden over time, such as the 2011 revision of the diagnostic criteria for Alzheimer’s Disease.  But that only happens after diagnostic criteria have been tested and validated on the more severe forms of disease. Precision based on what we know, is the first step.

Conclusion

In summary, you face the enormous challenge of creating diagnostic criteria for a disease with conflicting case definitions, no gold standard biomarkers, and competing views about how to define the problem. You must avoid multiple pitfalls, including the high prevalence of the symptom of chronic fatigue in the general population and the effects of those competing case definitions on research results, and never lose sight of the very high stakes we face. But there is a way for you to overcome all of these challenges, and that is by being accurate and precise. If you set aside the fatigue umbrella and focus on the core symptoms of this disease, if you establish frequency and severity threshold requirements, and if you recognize that your diagnostic criteria will be part of an iterative process of refinement, then I believe you can create diagnostic criteria that will advance clinical care and research, instead of putting us further behind: a definition that is sensitive and specific for ME/CFS.

I have submitted more details in writing, including references, for your review. Many of my fellow advocates have done the same, and I hope you will review that material with the same attention you have given us this afternoon. If you have any questions about what I’ve presented or if I can assist you further, here is my email address: jspotila AT yahoo DOT com. Patients are an essential resource for your task, and I hope you will involve us to the fullest extent. Thank you for the opportunity to speak to you today.

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55 Responses to Accurate and Precise

  1. Thank you so much! You’ve taken such a positive and clear approach. Its so reassuring to know that we have advocates like you!

  2. Shar Childers says:

    Well done!

  3. Maureen MacQuarrie says:

    Thanks for making your presentation Jennie and thanks for all you do. You came across very well yesterday at the actual meeting, in spite of the way you were feeling. All advocates and speakers gave the IOM (and government agencies) a lot to think about, from many different perspectives.

  4. Eva says:

    Jennifer, thank you so much for a very informative and thorough, remote presentation. Your advocacy means so much to all of us with this illness. The CDC needs woke up, literally.

  5. Chris says:

    Thank you very much for all your writing and presenting.

  6. floydguy says:

    Several thoughts:

    – Why stop at de-emphasizing just fatigue as a symptom? Why not de-emphasize all symptoms and focus on just the areas of objective diagnostics such as sleep REM issues, exercise intolerance, various infections, immune abnormalities, etc.? This continued focus on the various and sundry symptoms make us sound like lunatics, which is probably by design. And will lead us down the rabbit hole of Chronic multisymptom illness.

    – I personally think this is a train-wreck because the goal seems to be to come up with a definition that any PCP can diagnose and presumably treat. This will harm people. My experience is that even somewhat knowledgeable and well meaning MDs can cause damage. It’s been stated that those that do the best have had the least intervention. I think that should be considered in this ill-conceived contract. Until there is some plan to expand the level of expertise significantly – not just 3 minute videos on the CDC website – or there is some major breakthrough, I think the advice should be to see Klimas, Peterson, Enlander and a few other people. The average PCP quite frankly can’t deal with this population at the present time.

    • Jennie Spotila says:

      Symptoms is what will bring people to the doctor to being with. My vision is that the right core symptom set with frequency/severity requirements will produce a cohort in which abnormal exercise response, immune abnormalities, etc can be quickly validated as biomarkers. If 2day CPET abnormalities are widely accepted as diagnostic for the illness, we enter a different world.

  7. Michelle says:

    @floydguy: While I agree that objective diagnostics are preferable to symptom lists, I do have to ask what the rest of the hundreds of thousands of us who do not have the resources to see Klimas, Peterson, Englander et. al. are supposed to do until the big breakthrough comes? Until the etiology of this/these disease(s) is clear, there is no specialty to manage this disease (indeed, that’s one of the main reasons ME/CFS diagnostic criteria development was farmed out to IOM). Therefore PCPs are going to have to diagnose and coordinate care for it and indeed one of the things this committee is charged with is to develop a “plan to expand the level of expertise significantly.” Moreover I’d also love to see who exactly has said that those who do best have the least intervention. If anything I’ve seen far more published and anecdotal evidence to the contrary. To be sure, some of much of the intervention in that published data has suggested has been CBT and GET — which is harmful to many (though helpful to some). But had I been diagnosed and introduced to pacing early in my illness, I might well still be able to bathe myself today.

    @jennie: First, excellent job, especially considering how sick you were. I thought your comments about the use of severity and frequency thresholds was especially insightful And I liked your slides — very clear and easy to follow.

    The big theme that I noticed in almost all of the patient feedback (my own in written form included) was a plea to focus on PEM. I know some of that was coordinated but so much of it was not. Yet we all managed to focus on this same thing and given the make up of the committee, it will be hard-pressed to ignore the centrality of PEM in any diagnostic criteria.

    I feel more sanguine about both this IOM committee and P2P. A careful, watchful sanguinity, mind you. Given how bad things are now, I doubt either can make things too terribly worse. But I can see them both helping us tremendously.

  8. Jane L. says:

    Thank you for your extensive efforts for presenting this, Jennie.

    I wasn’t able to tune into the stream, but just going from your post and the comments here, I also believe PEM (or PENE as it is described in the ICC), cognitive dysfunction, immune abnormalities like low NK cell function, and manifestations of autonomic nervous system dysfunction (which are borne out in objective data in existing tests like the 2-day CPET) are also the core signatures – at least, it seems to be in terms of the bare minimum experienced symptoms, when you strip the other symptoms that seem to vary from patient to patient (e.g.,. some people have pain, persistent flu, food sensitivities, thyroid issues, etc. and others do not) that give rise to the supposedly impossible to deal with heterogeneity of ME/CFS patients.

    I think the core symptoms are what makes our small handful of specialists able to recognize an ME patient almost instantly.

    The supposed heterogeneity of patients should not be impossible to deal with in terms of coming up with the most optimal diagnostic criteria possible at this time (i.e., where the cause or causes aren’t known), as long as really smart people look at the right information, cut through the heterogeneity noise/crap, and work through it with unbiased and real commitment. (And, it should go without saying but unfortunately bears constant reminding, by excluding any conceptions of psychogenic origin from the very beginning.) It may be a mostly delusional hope, but one can still hope.

  9. Ren says:

    Thank you – and rest well.

  10. Kathy says:

    Thank you once again Jennie! I so appreciate your working so hard on this in spite of being ill with a fever. It is a great presentation and I love your analogy to pain.

  11. N.A.Wright says:

    Yours was undoubtedly the most cogent contribution of the day, indeed you’ve given the IOM process what should be its leading keyword – iterative. The limitation of all previous criteria is they have been created with a view to establish an illness definition of ‘fixed authority’, but such a thing is absurd where it is patently obvious that further research will render previous definitions partially or wholly redundant. At this stage diagnostic criteria, whether for clinical diagnosis or research purposes can only be a ‘work in progress’; recognising the need for iteration is essential if the employed diagnostic criteria are not to become yet another barrier to both individual patient need and scientific elucidation.

    Iteration is something the various patient groups could usefully take on board, there seems a particularly unhealthy belief in the capacity of symptom lists and favoured biomarkers to be able to encapsulate distinct biological processes. In reality what we call M.E or CFS or CFIDS etc, may turn out to be multiple conditions, expressed singly or even multiply in individuals. Patients as well as institutions need to think far more expansively about what scientific developments may bring – for M.E/CFS the future is either iterative, or its back to stagnation.

  12. Billie Moore says:

    Floydguy,

    We can’t just eliminate symptoms because they have no validated measure yet. “Fatigue” is not one of our symptoms; post-exertional collapse is. It is the core symptom. This difference was well addressed by our patient advocates at the IOM meeting on Monday. The general symptom “fatigue” must go; any name with fatigue in it must go.

    I have concluded that no one who is knowledgeable about ME should use the term PEM- post-exertional “malaise” – any longer. “Post-exertional collapse,” Denise’s term, is much more accurate and descriptive. Let’s adopt that. PENE is also accurate but cumbersome to say in full and there is no one pronunciation for the intials. Let’s get rid of any word that is vague and demeaning, and malaise is just as bad as fatigue. Even if we have not consulted with any experts about this, it does no harm to jettison PEM as we talk and write, and particularly as we do either with the public, medical professionals, and elected officials and their staffs. PEC – post-exertional collapse – short, clear, dramatic, accurate.

    On another topic regarding the IOM study: the panelists. We were told the current panel is provisional. Only 7 of 15 members are experts in ME/CFS. Some have backgrounds and/or writings which suggest definite bias toward the disease being psychological. I urge everyone to write to the IOM ( mecfs@nas.edu) and press them on this issue: more experts; remove some at least who are raising red flags to us. Here’s the full list of names of the current panel again: http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592.
    We need more experts on that panel!

    Billie

  13. floydguy says:

    @Jennie Spotila

    Please note I did not say eliminate. I said de-emphasize. I think emphasizing a handful of symptoms won’t be “sensitive” enough but I am open to seeing what that might look like. I do agree that being accurate and precise is needed. What is “fatigue”? What is “pain”? There are way too many vague and meaningless symptoms in the dialogue.

  14. Firestormm says:

    Hi Jennie :)

    As I said on Phoenix – you rocked!

    It was interesting to note Beth’s presentation – the slide she used showing the core symptoms – not that I can specifically remember it now but I thought at the time it reinforced the points you were making.

    Do you have any thoughts about how the committee might view a more suitable name or a name in general? Again it was interesting – and probably correct given the environment – that those who chose to either stuck to the initials of ME or Encephalomyelitis. But it’s a hot potato and one that I feel certain will cause much consternation should something half-baked from out of all this (pun intended).

    Rest well. Great job.

    • Jennie Spotila says:

      I thought it was very significant that Dr. Lee said that CFS is a demeaning name, especially since she was representing HHS at this presentation. Can we assume that is the new position of HHS? More troubling is how to reconcile that statement with CDC’s continuing insistence on using CFS as an umbrella term.

      It seems likely that CFS may go by the wayside, and I agree with many advocates who say we need a completely new name. That would be ideal. But I also agree with all the concerns raised about ICD coding and implications for insurance and disability. The ME code is just sitting there, unused in the US. So my personal inclination is to do that because we wouldn’t have to wait for a new code (takes years) and we wouldn’t risk getting a new name that puts us worse off. I have to say, though, that my thinking on this continues to evolve and I’ve learned a lot from other advocates’ positions on the subject. And getting the definition right is my personal top priority.

  15. floydguy says:

    @Billie Moore

    I don’t have confirmation of Post Exertional Collapse and I don’t report it as a symptom. I do however report and have proven exercise intolerance. At this time, there is little to no evidence to suggest that the litmus test for ME should be “PEM” – a “symptom” still primarily recognized by subjective questionnaire. If this becomes the case, I will be absolutely thrilled to get rid of this ridiculous dx. Personally, I think it’s a mistake to make “PEM” a cardinal feature until there is an accepted test that recognizes the phenomena. As stated before, especially based on the fact there are many PROVEN abnormalities such as ANS dysfunction.

  16. Ess says:

    EYES WIDE OPEN — ‘Don’t like the trivializing name?’ OK—welllll, we can understand that — AND, since there are sooooooo many symptoms to consider—-we’re just gonna hafta call it something like–ohhhh, I know–let’s just slot it right in there with Chronic Multi-Symptom/System Illness/Disorder — ya, ‘that’ll work’ nicely for our purposes. EYES WIDE OPEN.

    • Jennie Spotila says:

      I definitely hear where you’re coming from. On the other hand, if CFS is demeaning to patients as Lee admitted, how could Chronic Multisymptom Illness be better? No one can make that argument with a straight face, not even the government. The move from GWI to CMI was probably motivated by many things, but one reason was to capture vets with the same illness presentation who had not served in the Gulf War. We don’t have that issue here.

      It’s no guarantee AT ALL. I’m not saying we’re definitely out of the woods on the name. But it would be hard to say CMI is fine if CFS is demeaning. This is another possible opportunity for input to IOM. Why not write in and say call it ME? (or whatever your preference is). The experts on the panel can also address this, and add the history of name change efforts to the mix.

  17. Ess says:

    Indeed, I have previously provided written comments to the IOM in line with the ME/CFS Experts and Researchers’ letters.

  18. floydguy says:

    @Jennie Spotila

    I am not so sure the situation is so different. Some things are the same such as a population with a diverse set of “symptoms”. Despite what Nancy Lee says – good or bad – there are almost certainly a lot of players on the government scene that don’t agree with what she says. I doubt Nancy Lee represents the official HHS position; there are almost certainly a lot of players behind the scenes who could swoop in at the last second and insert just about anything.

  19. Ess says:

    Roger on that — THAT is the name of the(ir) game, Floydguy . . . and we are trying EARNESTLY to get OUT of THAT ENTRAPMENT!!!

  20. Ecoclimber says:

    ‘@Jennie “the move from GWI to CMI was probably motivated by many things, but one reason was to capture vets with the same illness presentation who had NOT served in the Gulf War.”

    Wrong! The IOM panel that redefined GWI or GWS as CMI, was instituted specifically for those veterans who served in the 1991 Gulf War. Please check your facts before making idle speculative statements.

    • Jennie Spotila says:

      I’ll double check, since I was speaking from memory.

      • Jennie Spotila says:

        Here’s what I found. The IOM treatment for CMI report from January 2013 says “The term chronic multisymptom illness was first used to describe
        chronic unexplained symptoms in Air Force veterans of the 1991 Gulf War (Fukuda et al., 1998).” and “Earlier committees of the Institute of Medicine (IOM) found no evidence of a specific symptom complex (or syndrome) that was peculiar to deployed Gulf War veterans (IOM, 2006, 2010).” See pages 21-22 of that report.

        The VA says “VA refers to these illnesses as “chronic multisymptom illness” and “undiagnosed illnesses.” We prefer not to use the term “Gulf War Syndrome” when referring to medically unexplained symptoms reported by Gulf War Veterans. Why? Because symptoms vary widely. – See more at: http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp#sthash.0KPBrwYS.dpuf

        So CMI is apparently not a new term. And VA prefers CMI to GWI or GWS because there is no set of symptoms common to all patients that qualify it as a distinct syndrome.

  21. Gabby Klein says:

    In an IoM Gulf War Ilness review http://www.iom.edu/~/media/files/activity%20files/veterans/gulfwarlitreview/clauw042005.ashx

    Dr. Daniel J. Claw clearly presents Chronic Fatigue Syndrome as one of the ‘systemic’ Chronic Multisymptom Illnesses.

  22. Curiosity says:

    @floydguy
    Before I knew what ME was or got my diagnosis, I had a lot of difficulty with doctors because I would mention these many symptoms, and they would dismiss them entirely because they simply were not familiar enough with ME to recognize that all of those things could fall under the same diagnosis. I didn’t think not to mention them at that time because I still had much more trust in the medical community, my symptoms were severe, and I thought that surely my doctors would want to know about them.

    Having doctors educated about what symptoms sets are common to the illness would have saved me being treated like a head case for mentioning them.

  23. Curiosity says:

    Excellent points, and realistic practical suggestions they can use. Thank you for putting this together. I’m very glad that they asked you to speak. I know you spoke representing yourself, but you have given voice to what many others of us out here felt as well.

  24. Chris Messina says:

    How open will the process be from start to finish? Will we get updates as the process continues, or will everything be behind closed doors and forced upon us?

    • Jennie Spotila says:

      IOM deliberations are completely confidential. No one outside IOM will be privy to the process until the report is issued.

  25. Chris Messina says:

    @Jennie Spotila

    Well – that’s disappointing. Is there anyone clearly on our side that will be part of the process (a Montoya, Enlander type)?

    • Jennie Spotila says:

      Multiple panelists are ME/CFS experts: Bateman, Chu, Keller, Klimas, Lerner, Natelson and Rowe. Dr. Davis is not really an ME/CFS expert, but his son is very ill with ME/CFS. I’ve written a great deal about all the panelists, available at this tag: http://www.occupycfs.com/tag/iom-panel/

  26. ixchelkali says:

    Brava, well said. Thank you.

  27. Ren says:

    “So CMI is apparently not a new term. And VA prefers CMI to GWI or GWS because there is no set of symptoms common to all patients that qualify it as a distinct syndrome.”

    I believe this is part of the controversy though – that VA claims there isn’t a set of symptoms to all patients, in the same way that ME has been diluted into CFS (which has been diluted into a CMI by the VA).

    To my understanding, the Committe on Veterans Affairs and the Research Advisory Committee were an attempt to correct various IOM/VA mis/disinformation – but after the RAC testimony last spring, VA (Eric Shinseki) punished the scientists who called BS on VA – and VA thus butchered the RAC in order to inforce VA’s agenda.

    Congressional testimony: http://www.youtube.com/watch?v=Zr2sAlf4QeQ

    Klimas on vet care / Comments on IOM CMI: http://forums.phoenixrising.me/index.php?threads/va-doctor-says-gulf-war-vets-not-getting-effective-treatments.27469/#post-418588

    I don’t know/understand though if congress is done with this – or if they will be able to assist in some further manner.

    Also of note -imo, in December 2013 VP Biden announced $100 million will be pumped into mental health care. There also seems to be a lot of new government focus linking chronic illness to mental health:

    http://www.whitehouse.gov/the-press-office/2013/12/10/vice-president-biden-announces-100-million-increase-access-mental-health

    http://healthypeople.gov/2020/LHI/mentalHealth.aspx and

    http://www.cdc.gov/pcd/issues/2005/jan/04_0066.htm

    And interestingly -imo, Verizon’s Verizon Foundation has jumped onboard and even sponsored a study on how domestic violence victims are more likely to suffer from chronic illness.

    http://www.examiner.com/article/new-study-reveals-domestic-violence-victims-more-prone-to-chronic-illnesses

    And VA coincidently is working with Verizon to promote “telemental health” and “virtual care” – including psychotherapy by distance, which was also promoted in IOM’s most-recent Gulf War text – as well as by one of that text’s authors, Drossman (DrossmanCare) who also promotes remote care through the company for which he is now CEO.

    http://www.verizonfoundation.org/our-focus/#healthcare
    http://www.verizonfoundation.org/better-access-to-healthcare/
    http://www.verizonfoundation.org/chronicdisease/

    http://www.fiercemobilegovernment.com/story/va-buys-ipads-and-verizon-plans-expand-telemental-health-pilot/2013-07-02#ixzz2qZB3rk9J

    http://www.clinicalpsychiatrynews.com/single-view/va-s-telemental-health-efficacy-surpasses-face-to-face-encounters/9120a6468f89121e11f8549b152cc526.html

    http://drossmancenter.com/about/concept/

    Sorry for so many links – And the above was taken from notes I made some weeks ago, and thus it isn’t fresh in my mind to see errors. I’m also reminded of the following from Clauw though on the IOM website:

    “Non-pharmacological therapies can be extremely helpful but are rarely used effectively in clinical practice / New ways of delivering non-pharmacological therapies will be helpful, especially if someone figures out a way to make money on education, exercise, CBT /
    Electrostimulatory therapies have significant promise”

    I believe the above (last slide – slide 33) was in reference to Fibro specifically and CMIs generally.

    http://www.iom.edu/~/media/files/activity%20files/veterans/gulfwarcmitreatment/meeitng%202%20agenda/presentations/clauw%20presentation.pdf

    Perhaps NSA will soon be monitoring doctor appointments??

  28. Ren says:

    P.S. Maybe we’ll see government contracts and articles on electro-therapy for CMI sponsored by GE?? :(

  29. Ess says:

    It is BLASPHEMOUS what has been done to the Veterans with the IoM definition, ETC.–all this fancy spin that ‘THEY’ put on explanations of the IoM and how helpful a new definition is/will be–for GWI sufferers, for ME/CFS sufferers. Look what IoM did to the Vets with CMI–and then–there-there–go have some CBT, GET and anti-deps. That’ll fix ya; that’ll do the trick–and away you go! Are you kidding me/us!!! That is what HHS has in store for ME/CFS via the IoM! Thanks for bringing the above information and more to our attention once again, Ren!

    Just whom is it that requires psyche attention and lessons in honesty and justice; do no harm . . . ?!! The powers that be!! We are stuck in a game of politics and we must fight against the intended harmful outcome . . . We must look at the BIG picture and not get lost in the trees–ergo–‘Can’t see the forest for the trees.’ That is another PLOY being used AGAINST us!

  30. Ess says:

    REMEMBER–that a psychobabble/depression diagnosis and DEFINITION of disease–STOPS disability insurance coverage @ TWO years–whereas with a NON-psychobabble/depression diagnosis definition, disability coverage does NOT stop @ two years.

    SOOO–that is the CRUX of the matter as to what we are dealing with in both GWI and ME/CFS.

    BIG insurance companies do NOT want to keep up with disability coverage for MILLIONS of people world-wide with ME/CFS. AND health-care providers do NOT want to pay the expense of lab testing for MILLIONS of people world-wide which will ID biological problems–so a ‘psychobabble diagnosis’ fits their agenda to a T–that is what it all comes down to.

    Researchers and scientists want to get to the answers for this disease–enter the heavy secretive hand of the HHS–COMPLETELY IGNORING THE ME/CFS EXPERTS AND RESEARCHERS in their EXPERTISE–and shoving in the IoM contract–a ridiculous POLITICAL contract–‘setting up’ the members of the IoM committee in a political game/USAGE–MORE abuse and deceit–NOT only to ‘us’ but to the members on the committee–and the P2P as well.

    We can only be fooled if we allow ourselves to be treated like fools listening to their ‘spin’ AND lies!! My life is more important than that . . . isn’t yours ?!!!

  31. Ess says:

    P.S. WHEN I first got diagnosed with ME/CFS — that’s what the insurance co. was really trying for–to railroad in depression if possible–then they’d be off the hook @ the end of two years. IT is ME/CFS–NOT depression–so that tactic did not work. BUT . . . it didn’t mean that the insurance company didn’t keep trying to CAUSE ME HARM so that I would give up the fight!! I did NOT give up the fight for my rights :) :) and, therefore, do receive my just disability.

  32. Ecoclmber says:

    Delay, Deny and Die The health care policy of the ‘five ‘eyes’ U.S., U.K., Australia, New Zealand, Canada are formulating a one health care policy whether it is GWI or CMI, ME/CFS -CMI, and Lyme. The IOM pupose is to move health care policy from symptom base to evidence base substantiated by a commerically verifiable medical biomarker otherwise it ends up in the psychogenic cesspool.

    http://www.huffingtonpost.ca/bruce-moncur/fantino-veterans-affairs_b_4699820.html?utm_hp_ref=canada#slide=3371756

  33. Pingback: Lean in*: the IOM, Wikipedia and a bit more legal | valerieeliotsmith

  34. Ess says:

    @Ecoclmber
    Thanks for that clear picture and the link, Ecoclimber–the five ‘Greatest Countries in the World’–U.S., U.K., Australia, New Zealand and Canada–and, in TRUTH, treating their VERY ILL citizens, vets and soldiers abysmally–seeking to RE-define and declare MILLIONS of us as NUTS when that is NOT the case–to save money–who cares about human life of their citizens–NOT our governments!! Hmmm–catchy ‘head liner’ . . . and reading material–Delay–Deny–and Die–Bye-Bye.

    Yes, you are right–LYME is in there too along with GWI and ME/CFS. PITIful, DISgusting, SHAMEFUL and BULLYING governmental acts AGAINST us–hardworking (prior to debilitating physical illness) and upstanding citizens contributing our worth, efforts and tax dollars ‘believing’ in our respective countries in a democratic society.

    THAT’s what we’s-a- FIGHTIN’ about–TRUTH, INTEGRITY, JUSTICE and our RIGHTS as HUMAN BEINGS!!!

  35. Ess says:

    Further to our discussions above–in triaging of priorities–just where does $16 M a year budgetted for male pattern baldness fit in terms of severely ILL people/citizens . . . ??!! Who needs the PSYCHE evaluation . . . ?!!!

  36. cort says:

    The main point for me is that ‘chronic multisymptom illness’ has a long history of use Gulf War Syndrome and researchers have regularly used to describe GWS for years. There is no counterpart to that in Chronic Fatigue Syndrome; i.e. there’s no reason that this panel, which has a strong ME/CFS core anyone, would adopt out of thin air – a term like that for ME/CFS. @Jennie Spotila

  37. cort says:

    Again, there is a historical precedent for call GWS CMI. Baraniuk used that very same term and seemed to prefer it in his recent GWS study. There’s no reason to think the OMI panel will decide to transfer that term to another disorder entirely. ..@Jennie Spotila

  38. cort says:

    I still don’t understand why a clinical definition will impact research studies or treatment trials neither of which will use it to determine who is in their studies.

    A clinical definition is by its nature broader and more inclusive while a research definition is tighter and more exclusive. Some people who meet clinical definition for ME/CFS will not meet the research definition, because they have other conditions/problems that could confound research results.

    Even if you have a lousy clinical definition the research definition should still winnow out the right subjects.

    • Jennie Spotila says:

      Cort, Fukuda was written as a research definition but has been used clinically for 20 years. We cannot simply cross our fingers and hope the IOM definition will be segregated to clinical use only. This is especially true because no one is writing a research definition. P2P is not writing one. So if you are correct, the IOM definition will be segregated to the clinic and Fukuda (intended as a research definition) will be used for research? That makes no sense.

  39. Ess says:

    @cort
    Interesting info here—it has been REVEALED / EXPOSED that that the chair of the IoM panel (GWI) — is A DIRECTOR OF UNITED-HEALTH INSURANCE . . . UNdisclosed info in Dr. Shine’s bio.

    “1 (6% of committee), the chair of the panel, Dr. Shine, is both a Director of UnitedHealth Insurance (undisclosed in bio) and a past President of IoM.”

  40. Ess says:

    I previously posted on your blog, Jennie–Behind Closed Doors–January 6th–link is below. I was a little skeptical about putting the link with my comment above as there has been tampering going on, e.g. Facebook–with information/comments mysteriously disappearing/blocked.

    –from my posting on January 6th, 2014–Something I came across recently in viewing this link in the Huffington Post (11/20/2013) entitled The Most Prevalent and Devastating Disease Your Doctor Has Ever Heard Of (Jennifer Brea)–in the comments section–(in reloading to the next 10 comments)–posting by Justin Reilly on November 21, 2013. A breakdown on the credentials of the IoM panel re the GWI redefinition is given listing MANY ‘interesting’ points.

    http://www.huffingtonpost.com/jennifer-brea/myalgic-encephalomyelitis_b_4303725.html

    In this post, the point below was something I was previously UNaware of and really captured my attention–i.e. the chair of the IoM panel (GWI) — A DIRECTOR OF UNITED-HEALTH INSURANCE . . .

    “1 (6% of committee), the chair of the panel, Dr. Shine, is both a Director of UnitedHealth Insurance (undisclosed in bio) and a past President of IoM.”

    Ess

  41. Ren says:

    @cort

    In the world of VA (2 Jan 2014), “medically unexplained illnesses” = “chronic multisymptom illness” = “chronic fatigue syndrome”. VA already defines CFS as a CMI.

    If one government agency (the VA) defines CFS as a CMI, then it seems highly, highly likely that the goal (of some in government) is to align the remaining government healthcare agencies with that of the VA.

    http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp

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