Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Evidence of Neurological Abnormalities in ME Suppressed in the IOM "ME/CFS" R

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Mar 7, 2015.

  1. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,114
    northern Maine
    :(

    It certainly is demoralizing. And then the demoralized patient appears "depressed" to the "physician", who now has a CYA excuse for not treating symptoms: "The patient refuses to consider antidepressants, is non-compliant, and lacks insight" :mad:

    When a new doctor gave me the psychobabble recently, I told her that there is a simple test to see if patients like us are depressed: ask us what we would do if we were to be cured tomorrow. But it fell on deaf ears. :bang-head::bang-head:
     
    Sidney, duncan, MeSci and 3 others like this.
  2. halcyon

    halcyon Senior Member

    Messages:
    2,306
    Likes:
    5,391
    Given the difficulties and uncertainties surrounding diagnosis, perhaps the patients that didn't show evidence of this actually didn't have ME then.

    I don't understand why we need to provide evidence that it is encephalomyelitis when the detractors don't have to provide evidence that it isn't. The disease was named thusly due to the clinical signs and symptoms present. Ramsay was 100% confident in calling it an encephalomyelitis.

     
    Izola, jimells and SOC like this.
  3. SOC

    SOC Senior Member

    Messages:
    7,841
    Likes:
    16,550
    I agree with your logic, but we're not dealing with logic. We're dealing with prejudice. The medical community is simply not going to accept encephalomyelitis at this time without evidence it considers 100% definitive. We can't provide that and since they have the power to name our illness and we don't, they win. We can fight that battle, but our odds of winning are miniscule. We have limited money and energy; we need to choose our battles.

    I'm fervently wishing for some clear marker to be identified soon so that we can get a sensible name we can all get behind. Until then we're spitting into the wind.
     
    barbc56, Stretched, jimells and 3 others like this.
  4. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    We are all in the same fight and have had many similar experiences. I know how shocking and difficult it can be when a doctor arrogantly dismisses our symptoms and disease name. If it isn't possible to go to one of the few specialists, then it is necessary to find other specialists who will at least accurately diagnose and treat some of the particular aspects of this disease, as well as--hopefully--a family practitioner, internist or the like who is at least respectful and open minded. It took me years to recover from my initital rebuffs, to learn to organize for these appointments and to find a few helpful doctors. Best I can do and for now, with the state of medical knowledge what it is, good enough.

    No longer new to this game
     
    Webdog likes this.
  5. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    A doctor friend (social) just looked at my strange cold white-gray finger with the purple color at the base and said, " you have Raynaud's!" I guess i have had these kinds of symptoms before but not realized that is what they are. I have a whole host of autonomic nervous system problems. A neurologist called what i have PAF. Am typing lying down excuse the trouble. The neurologist wondered if i might have MSA but then went back to PAF. I know that what I have is ME. This is the big picture but the autonomic dysfunctions fall within it. Help for some of us can come from those dysautonomic specialists, by the way, whose specialty seems to involve more scientific and research attention than we usually get. While the woods aren't full of them, there are more of them around than ME/CFS specialists, and they will at least recognize and respect neurological difficulties and are up on all the medications.
     
    Last edited: Dec 3, 2015
    ahmo and jimells like this.
  6. kangaSue

    kangaSue Senior Member

    Messages:
    848
    Likes:
    930
    Brisbane, Australia
    I noticed you mentioned PAF, I take it that refers to Pure Autonomic Failure. There is another condition with various autonomic dysfunctions, similar to that found in ME, that mimics PAF called Autoimmune Autonomic Ganglionopathy. AAG is. It can be of sudden onset or a gradually worsening progression of symptoms, most often because of antibodies to nicotonic acetylcholine receptors
    http://www.ncbi.nlm.nih.gov/pubmed/23568990
    http://www.hindawi.com/journals/ad/2013/549465/
     
  7. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    Thanks @kangaSue I wondered too if I might have AAG and tried to bring it up in an appointment but don't know what happened. I will bring it up again. I recall that on some form on which he had to write my diagnosis, or one of them, he wrote Autonomic Neuropathy.

    I looked at the articles you linked. They are good, especially the last one is thorough, but it is unfortunately beyond my knowledge and understanding. I can relate to symptoms they cite b ut not enough of the technical stuff. What really helps me are videos of informed doctors explaining these types of illnesses more in layman's terms. Do you know any of those on this subject?
     
  8. kangaSue

    kangaSue Senior Member

    Messages:
    848
    Likes:
    930
    Brisbane, Australia
    @Sing, sorry, I've never looked for any video's on the subject.
     
  9. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
  10. kangaSue

    kangaSue Senior Member

    Messages:
    848
    Likes:
    930
    Brisbane, Australia
    Thanks for that, I'll check it out. I'm usually too impatient to sift through videos, I don't feel so much like I'm wasting my time by reading through articles.
     
  11. halcyon

    halcyon Senior Member

    Messages:
    2,306
    Likes:
    5,391
    They've already accepted it; the WHO in 1969 and the RSM in 1978. They don't get to take it away just because they conflated it with CFS.

    More importantly, you'd have to prove that the initial insult, versus the ongoing perpetuating factors, also isn't an encephalomyelitis. This has never even been looked at properly. We don't remove the diagnosis of encephalomyelitis disseminata from a patient having symptoms but no active lesions. Why do they get to do it with ME?
     
    duncan, Izola and SOC like this.
  12. Izola

    Izola Senior Member

    Messages:
    492
    Likes:
    576
    it

    Does it have to be a demyelinating Neuroinflammation to qualify as an encephalomyelitis?
     
  13. Izola

    Izola Senior Member

    Messages:
    492
    Likes:
    576
    What is the origin of the "Rules of evidence" used outside of jurisprudence?
     
  14. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    Evidence based medicine has its own rules, but there are different sets of them, different layers of them, and different levels of compliance with them. I think the IOM has its own rules, generated internally, which would be a variant on the general theme. The purpose is to minimize bias in science, but I claim it can actually increase bias if not applied appropriately.
     
    Izola and duncan like this.
  15. Izola

    Izola Senior Member

    Messages:
    492
    Likes:
    576
    Thank You. Alex 3619. I had been puzzled about your comments about the "Rules of evidence" relating to medical matters/research. My muggy brain seems to puzzle quite easily the more it nears the ME endpoint.:( Now I get it, in spades. Certain medical matters and justice courts. Their amazing commonality. :rofl: iz
     

See more popular forum discussions.

Share This Page