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IOM's response to patients' concerns about panel selection

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 12, 2013.

  1. aimossy

    aimossy Senior Member

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    @ ember good point!!
  2. WillowJ

    WillowJ Senior Member

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    something like

    1) money for study of proposed and new biomarkers

    2) money for study leading to pharmaceutical treatments

    for clinical guidelines:

    • Test NK cell function (study what to do about that); discuss benefits and risks of potential therapies (e.g. immune drugs).
    • Test for autonomic problems if it seems at all likely (and if financially feasible--if not at least do the available simple approximations); (if found, attempt to determine whether those are primary or comorbid)
    • Test for sleep disorders if it seems at all likely (and if financially feasible); look for subtle disorders like frequent wakening and upper airway resistance as well as traditional disorders like apnea and narcolepsy (if found, attempt to determine whether those are primary or comorbid)
    • Test for gastrointestinal issues/diseases/infections if there are any indications at all (if found, attempt to determine whether those are primary or comorbid)
    • Do a neuropsychiatric test with a skilled expert if patient complains of difficulties with cognition (and if financially feasible)
    • Test for inflammation with both generic measures (such as ANA and CRP) and whatever more specific tests look most promising from the literature (cytokines and such); (if found, check for alternate or comorbid conditions but don't assume these cannot come from ME); discuss benefits and risks of potential therapies (e.g. anti-inflammatories, DMARDs such as Plaquenil, other immune drugs).
    • Test for infections (study what to do about that); discuss benefits and risks of potential therapies (e.g. antivirals, antibiotics, immune drugs).
    • Treat pain and sleep. If patient requests it, treat depression. Discuss benefits and risks of treatment options, and monitor side effects.
    • Treat other symptoms as identified. Check CCC/ICC and consult with identified experts for help (e.g. the signatories to those, Dr. Chu, Dr. Montoya, Dr. Enlander, etc.). Discuss benefits and risks of any potential treatment options.
    • Be alert for comorbid diseases (or alternate diagnoses). Not everything is ME/CFS. These patients can get appendicitis, asthma, etc. just like anyone else, and may get infections more easily. Heart failure and some kinds of cancers may be more likely. Migraine is likely. Autonomic dysfunction, connective tissue disease, and autoimmune diseases could be more likely. People diagnosed with CFS on the basis of fatigue could be developing MS. etc.
    • Be aware that ME/CFS symptoms, just like MS symptoms, Alzheimer's symptoms, and diabetes symptoms, are caused by something and some of them can be discovered what from (we don't have as much research as those other diseases to indicate what, and the definitions we've been working from are not specific so it's hard to say what is going on in what patient, but every patient has some kind of disease and we do have some research to give some amount of direction for what to look for: CCC and ICC are good introductions to those). Just because we can't prove x is the cause of ME or can't show that x is in all ME patients or that x can diagnose ME doesn't necessarily mean x isn't a factor in the patient in your call room.
    • Chart pain, disability, and cognition regularly. Also any other symptoms which seem important to the patient (ask).
    • Ensure sufficient social support and assistive devices.
    • Offer flu/pneumonia/tetanus/etc. vaccines but support the patient and offer alternatives if vaccines are declined, as patients may experience adverse reactions/flares/declines of condition.
    • When beginning medicines, consider starting with a lower dose and working up to an effective dose (which may or may not be lower than for other people; there is a suggestion that some patients may metabolize some medications more slowly)
    • Support the patient if they wish to try CAM, but check for interactions with any drugs and monitor side effects
    • Support the patient if they wish to try nonpharmacutical interventions for sleep or pain (but do not insist they attend CBT or sleep hygiene class before doing anything else, if the patient feels this is not the issue), and monitor side effects
    • Before recommending exercise, consider the patient's ability to carry out ADLs. If you and the patient do want to try this, be sure it is careful, nonaerobic, non-impact. and self-paced. Something that can be done lying down may be better tolerated. Do not expect continuing improvement, nor even necessarily a stable level (as this is a fluctuating condition there may be setacks; observe whether they seem to be related to exercise/activity, and scale back or discontinue the exercise or activity if they might be related). Many patients may be unable to carry out even a very mild, very short, exercise program. Prioritize for ADLs, and for avoiding exacerbations of the patient's condition. Monitor side effects carefully. Listen carefully to the patients' prior experiences. Study the Workwell papers on cardiopulmonary function during PEM (replicated), and take a look at the Light et al. papers on gene expression after moderate exercise (not yet replicated) and the Jammes et al. papers on muscle dysfunction with moderate exercise (replicated but only in other small studies).
    • Discuss benefits and risks of all treatment options.
    Last edited: Nov 13, 2013
    August59, SOC, Mark and 2 others like this.
  3. Iquitos

    Iquitos Senior Member

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    I don't agree. The wide range of education and experience of our MECFS experts adequately covers what needs to be covered. They didn't start out to be ME "experts." They had other training and experience before all this came down.

    The disinformation and lack of medical school education, the clinician ignorance, those were produced by the CDC's $5 million propaganda campaign, carried out by the CAA back in the 90's. In fact, I see this IOM manuever as a second assault on getting real information out to clinicians and the public in general. It's the same song, second verse, of the name change to chronic fatigue syndrome instead of myalgic encephalomyelitis, which was not the improvement the US health bureacracy claimed it would be. It's premeditated disinformation once again. Last time they imported some psychobabblers from England and called it an "international" group.

    It's already part of the diagnostic process to do the "eliminations" to eliminate other diseases, to the extent possible. That, IMO, is a red herring.

    The biomarkers are not all that "illusive", either. Many have already been found: NK cells, VO2Max scores, MRIs of brain lesions, mitochondrial damage, second-day scores of energy metabolism after exercise. We already have 66 experts who can use these biomarkers to diagnose and eliminate. Nobody but the government "needs" more.

    We all want more work done on this but wasting 18 months and $1 million is not going to help, even IF they were honestly trying to improve the situation, which they are not.
    Stuart and justinreilly like this.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Not sure I understand what you're saying.

    I think it's most likely the non experts will do what they did in all the GWI reports- portray ME as psychogenic and in need of CBT and GET.

    Why would non experts in other disciplines signing off on a case definition give it greater approval?

    We need CCC to get greater approval, thats why everyone is saying HHS should adopt it.

    Why do you characterize the experts as 'claiming' to be most familiar with the disease. We know they are.

    Yes, I think NICE is not tight enough and recommends CBT and GET too much.

    I would like CCC to be adopted by HHS, as does almost everyone else. Lets get that nailed down first, before we get 'fancy.'

    Then if funding appears from somewhere for a bona fide thorough review of biomarkers to add by our experts that would be really great. Then immediately go to validating and field testing and whatever else needs to be done to implement it for research ASAP.
    Last edited: Nov 13, 2013
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  5. vamah

    vamah Senior Member

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    I think non experts need to be brought in to talks about implimentation, as they can give practical advice about, say, the logistics of providing treatment.

    But the guidelines should be established by experts in the field, not those from other fields who are likely to be biased towards giving their specialties more clout. I am thinking of psychiatry especially.
    Michelle likes this.
  6. A.B.

    A.B. Senior Member

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    The superstitious IOM staff is not qualified to define ME/CFS.

    Would you undergo heart surgery in a hospital that lets a psychologist have a say in how to proceed during the operation?
    Last edited: Nov 13, 2013
    Iquitos likes this.
  7. Firestormm

    Firestormm Guest

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    Interesting and perhaps relevant research came out I think the other day, was posted on Facebook, though the date is unclear. Certainly this year (2013) from Jason:

    I haven't read the entire paper, but it might be used to suggest that a national guideline is needed, or that a national guideline if produced would need to be rolled out to US medical schools more effectively than it seems the existing efforts have been.

    Note: Posted on the ME Research thread here.
  8. Firestormm

    Firestormm Guest

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    No. Not to to have a say in the operation/surgery but yes in any problems I might have pre or post operation including coming to terms with life. At least I would like to have the option of having assistance on hand to help me come to terms with coping, and 'illness management'.

    With ME we are not at the surgery stage - more's the pity!
    Michelle likes this.
  9. Nielk

    Nielk

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    @Firestormm - is this a recommendation for CBT?
  10. leela

    leela Slow But Hopeful

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    Sure, coping skills are often needed for any life-threatening or long-term illness--however this need is not construed as definitive of the illness itself. Do psychologists and physical therapists help create the diagnostic criteria for cancer, MS, or parkinson's disease? I don't think so.
    Michelle, Keela Too, Iquitos and 5 others like this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    superstitious? that's one i hadn't heard yet. Only non experts who won't step on cracks in the sidewalk are allowed on the panel? lets go with it.
    Snowdrop and Iquitos like this.
  12. Ember

    Ember Senior Member

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    Who does the IOM deem “capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community?” When did the clinical observation of experts in a field stop being objective?

    Compare this IOM paternalism with Health Canada's "Terms of Reference" for the CCC: "Panel members had to be practicing MDs actively treating and/or diagnosing ME/CFS, or MDs or Ph Ds involved in clinical research of the illness."
    Last edited: Nov 13, 2013
  13. Andrew

    Andrew Senior Member

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    I'm too sick right now to compose my conclusions, but I post this for others. This is from the beginning of the GWS report.

  14. aimossy

    aimossy Senior Member

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    I don't think that the medical community as a whole believe ME clinicians and experts.....I think the only thing that will turn that around is very compelling research that is right in their face, then they will respect what ME clinicians/experts say after the fact. I think that is horrible but this is what Im beginning to see after 5mths of researching on the net. could someone tell me if my perception of that is off and why if it is.
    Also what happened to the research about our shrinking brains......that's pretty in your face stuff was the finding inconsistent?
  15. Firestormm

    Firestormm Guest

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    No. It was a response to an analogy that I didn't think was appropriate to ME at this point, and as I said, more's the pity.

    I can't help but think you have me down as a supporter of NICE and/or the IOM contract: even as a supporter of CBT, GET and Activity Management.

    I want a multidisciplinary approach available to patients with a diagnosis of ME such as it is at the point we are at i.e. without a biomarker and test.Such as happens or is meant to happen with Parkinson's Disease and MS.

    I would like the primary physician (GP) to feel confident in making a diagnosis of ME, of carrying out tests to rule out other possible explanations for the symptoms, and of being able to refer onwards to either a specialist team in relation to the ME or to other specialists if tests or his opinion lead to alternate diagnoses.

    I want every single person who claims to have ME to have a definite diagnosis - such as it is - and I want data to be collected to permit large-scale epidemiology study; and studies that follow progress etc. As was recommended by NICE but NEVER acted upon.

    I would like the specialist ME team to confirm the diagnosis - based on their experience in dealing solely with people with ME - and I would like all teams to include representatives from associated and important disciplines e.g. neurology and/or immunology, occupational therapy, and yes, psychology (you may now sneer). All specialists should be available - if the patient wants to visit with them.

    I want the specialist team to use their expertise to again 'filter' the patient and ensure they do not have some other explanation for their symptoms - which may change at each consultation - and that might lead to a treatment which could relieve them of those symptoms and return them to a more normal existence.

    I want the specialist team to help the patient learn to accept their disability, to accept their life with ME, and to help them make adjustments to their homes and their way of living, and to help them with any needs in relation to claiming benefits.

    The specialists should be accessible and approachable and if a patient is having problems with others in their life accepting that ME is real and devastating, the ME specialists should be able to listen and help work with those others to make them more aware.

    I certainly want medical involvement in any specialist team and for all patients to have access to that consultant - who should be able and willing to prescribe (through the primary or lead physician) symptom management drugs. This consultant should also be willing to try and discover if specific signs are the result of something other than what is believed to be ME, and this might involve additional testing.

    I want a clear clinical guideline, I think it is necessary and important. Something that all doctors can use to try and ensure each and every person diagnosed with ME can feel confident that they have it.

    The guideline - and resultant training - should leave the clinician in no doubt that ME is real and devastating and what it means for the patient to know that there is no cure or specific treatment but to also be aware that there is much the clinician can do to help alleviate some of the symptoms and to remain ever vigilant for alternate explanations.

    I do think that the most generally applied 'treatment' is a series of methods that can best be described as 'illness management' or 'symptom management'. I don't believe therapy is the only answer that should be afforded in relation to illness management.

    My biggest criticism of NICE was that it didn't advise doctors on the various drugs that could be tried to help alleviate some of the symptoms - I think it mentions only one (or possibly two) drugs in the whole of the guideline and one is certainly an antidepressant though prescribed I think for pain and/or sleep. I am not talking about experimental drugs thought to tackle the disease itself - I mean drugs that are available generally and that could help alleviate symptoms.

    I also don't think NICE paid enough attention to patient sensitivities and intolerance's with regard especially to drugs, and given that it mentions only one or two drugs in the entire Guideline, the weight applied to anti-depressants (even if the main intended relief from the drug is not relief from depression) was far too great.

    Ideally I'd like to see 'illness management' relate more to activity management (which having now undergone some therapy in this regard is I think more akin to pacing) but which embraces some of the principles of CBT and GET, rather than have the three therapies separate.

    And I'd like to ensure that specialist provision is available to at least everyone who has 'moderate' and 'severe' ME should they want to use the service.

    Specialists should be funded to make home visits. This again is something that NICE included in its Guideline though I understand regional funding is being blamed for home visits not happening everywhere or as often as is needed.

    I'd like to see patients able to attend specialist provisions e.g. medical consultations and therapy and receive home visits, for as long as the patient wants them to continue. Again funding means that access is limited and necessitates a fresh referral to a provision should a patient be discharged and then, for example, relapse and need that specialist help once more.

    NICE referred constantly to a 'personalised' approach to clinical care. That means an individual should be treated as an individual. We might all have a diagnosis of ME but we are all different.

    Physicians should feel confident to treat individually as well as collectively according to a Guideline and not dismiss an individual with a diagnosis of ME if they present with new or increased symptoms.

    Anyway, I must get back to bed. This apnea and my epilepsy is driving me nuts lately though not as much as I suspect my views are driving you :(
    Last edited: Nov 14, 2013
  16. WillowJ

    WillowJ Senior Member

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    I'm pretty sure the reason for this is that CDC, Mayo Clinic, etc. contradicts them. Problem is, our experts use more narrowly-defined research and CDC, Mayo Clinic, etc. relies on research (mostly Oxford inclusion, or at best reviews and analyses of everything that expects Oxford to count the same) that includes pretty much anyone who can't be diagnosed in a single office call by a GP and includes people with a wide variety of other diseases (that was a good year; the previous check was worse).

    This is the same as trying to study Tuberculosis by including everyone who has a cough or any kind of breathlessness, but didn't get an x-ray or pulmonary testing, just a few blood tests and a quick look-over. If they are obviously wheezing or have a high fever, they would be diagnosed as having something else (even if TB might cause a fever anyway), but if they don't happen to have asthma attack during office call and don't have any very obvious bloodwork wrong, they get included in TB even if their real problem is COPD, asthma, a cold, lung cancer, GAD, or multiple sclerosis.
    Last edited: Nov 13, 2013
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  17. WillowJ

    WillowJ Senior Member

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    all doctors (should) know that's available, as it should be.

    However, they shouldn't need to be told in a guideline as if it's specific to this particular disease. It gives the wrong message (i.e. this disease, unlike other diseases like heart failure, mulitple sclerosis, epilepsy, end-stage renal failure, and narcolepsy, is uniquely in need of coping assistance? no, that's not a fact and so this shouldn't need to be said. )

    ETA:
    Adding CBT for those that want it to a guideline makes no more sense than CDC advising doctors to think about nutrition. That's basic 101 stuff, not disease-specific stuff.

    Guidelines are for: what do you do for this specific disease, as opposed to disease in general.
    Last edited: Nov 13, 2013
  18. WillowJ

    WillowJ Senior Member

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    Is it possible the second part of this is not meant to contrast the first part (contrast to the first part would be "non-experts are capable and objective whereas experts are not") but instead meant to contrast to biased nonexperts? (e.g. "we all know the ME/CFS experts are trusted; here is why we think you can trust the non-experts we will also put on the panel")

    This is not an argument for non-experts--I agree that this is like putting non-mechanics and non-engineers in charge of car motor design.
    Last edited: Nov 13, 2013
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  19. Nielk

    Nielk

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    What is the added value of clinicians who have never seen an ME patients compared to clinicians who have had experience treating ME patients? If there is a need for example for a neurologist on the panel, why choose one withouth any ME experience over one who does?
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  20. aimossy

    aimossy Senior Member

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    Thanks for your comments @WillowJ so I have a question will the non-experts on the panel be given research info that they would view as understandable, viable and compelling to the point that they will have no option but to view this illness as real?
    I just get the sense that our experts are viewed as quacks within the medical community.....am I being too brutal with my honesty is that unfair? I hope to hell this is not true.
    how do you go about changing an attitude like this if that is the perception?
    sigh!!!!!
    we need to get the non-expert in ME medical community on board in order to affect change.

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