The 12th Invest in ME Research Conference June, 2017, Part 2
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Dear Ben, have you read the work of Yves Jammes? ME/CFS is not MUS

Discussion in 'General ME/CFS News' started by WillowJ, Apr 7, 2011.

  1. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Dear Dr. Ben Natleson,

    I wondered if you were aware of this work. It's true that ME/CFS is Medically Underinvestigated, but I do not believe it is either fair or accurate to call it Medically Unexplained.

    Sincerely yours,
    WillowJ

    Jammes Y, Steinberg JG, Mambrini O, Brgeon F, Delliaux S. "Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise." J Intern Med. 2005 Mar;257(3):299-310. PMID: 15715687

    follow-up:

    Jammes Y, Steinberg JG, Delliaux S, Brgeon F. "Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses." J Intern Med. 2009 Aug;266(2):196-206. Epub 2009 May 19. PMID: 19457057

    Replicated (partially):

    Thambirajah AA, Sleigh K, Stiver HG, Chow AW. "Differential heat shock protein responses to strenuous standardized exercise in chronic fatigue syndrome patients and matched healthy controls." Clin Invest Med. 2008 Dec 1;31(6):E319-27. PMID: 19032901
     
  2. justinreilly

    justinreilly Senior Member

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    Right Willow. It bums me out when those who know better say these things. Are you responding to something specific Dr. Natelson published or said at the NIH SoK meeting? If you put up his email, I will email him too. Thanks for being on top of this.
     
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    yes, he put up a slide that said "somatic" illness was pejorative and that, I couldn't tell if he was saying CFS had somatic amplification or if that wasn't so... the next slide said it was not somatic... but he did eventually say one should replace somatic with "medically unexplained" because that wasn't pejoritabe and seemed to say that CFS was medically unexplained...

    of course that should be taken in context that he has written a book titled Your Symptoms Are Real: What To Do When The Doctor Says Nothing Is Wrong. He obviously believes we are sick with a real disease and all his articles state that it's the approach of his team to treat CFS as an actual disease and not psychogenic; he just seems strangely unaware that there's enough research to indicate general nature of many of our symptoms? unless I totally misunderstood him...

    Will someone else let me know if they understood the same thing I did?
     
  4. justinreilly

    justinreilly Senior Member

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    i haven't watched the vid yet. "somatic" means "bodily" or "physical." He probably said "psychosomatic" ie "mind/body". regardless "MUS" is not great since it's mostly a term of art used by the charlatans to imply "medically unexplainable" though they say "unexplained". It's no more unexplained than MS and other diseases whose etiology is still not completely nailed down; we do have a fairly good picture (though certainly incomplete) of pathophysiology.
     
  5. insearchof

    insearchof Senior Member

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    Hi Willow & Justinreilly

    I did not see the presentation.

    However, Natleson is correct when he says it is a medically unexplained illness. That is in essence why it is referred to as a syndrome: - a collection of signs/symptoms the medical cause for the collective symptoms, remains unknown. ie: medically unexplained.
     
  6. Snow Leopard

    Snow Leopard Hibernating

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    That's why it was originally named a 'syndrome', but that is not an argument as to why it should remain being named a 'syndrome'.
    See Gilliain Barre Syndrome, Cancer Syndrome etc.
     
  7. Enid

    Enid Senior Member

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    I wasn't happy with the term "syndrome" either - (my brother a Doc used it and I was pretty offended but realised it referred to something they - Medics - didn't as yet understand).
     
  8. insearchof

    insearchof Senior Member

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    Hi Snowleopard

    It is, what it is unfortunately. As Enid points out - it is used by the medical profession for any illness the cause of which eludes them.

    Frankly, I would like to see the entire illness classification ''CFS'' abolished. That way, the medical profession would be forced to focus more on individual symptoms and consider other possible illnesses. It is far too easy (given how broad CFS is on a medical definitional basis) for doctors who are either clueless, not interested (for what ever reason) or pressed for time - to dish out this diagnosis and leave patients languishing there - offering GET CBT and nothing else. Many patients with a CFS diagnosis have been found to be misdiagnosed - having had other serious illnesses. Byron Hyde of the Nightingale Institute talks about this - but most people / org's do not want to hear this message....it creates anxiety. Whilst it might do so, I believe Hyde is morally correct in speaking up about this matter because all he wants to do is ensure that the underlying cause of a patients illness is throughly investigated and it is simply not happening when doctors are too eager to assign and leave patients with a diagnosis of CFS.

    There are also many patients I believe who have ME, but have been mis diagnosed as CFS - due to the lack of knowledge on the distinction between the two and the misinformation that they are essentially the same illness - which is not true.

    The entire category of CFS does a dis service to all.

    ISO
     
  9. Enid

    Enid Senior Member

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    Good for Byron Hyde - "thorough investigation" is completely lacking here. K de M/Chia and others are finding "pathogens" requiring treatment. And we look across the pond with some degree of envy at those found and treatable for so many sufferers. Only one conclusion - they are not looking hard enough here. And any label CFS/ME in the UK dominated by the Psych's past and present has provided an excuse not to look either despite the range and awfulness of symptoms.
     
  10. insearchof

    insearchof Senior Member

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    Agree Enid. Same problems are encountered here as well. That is why I believe it would be better to abolish CFS.
     
  11. Desdinova

    Desdinova Senior Member

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    I have mixed feeling regarding this man. While he has clearly come a long way since his first book Facing and Fighting Fatigue: A Practical Approach which left me feeling more than a little insulted and angry. I still don't think that he really fully grasps what it is that many of us experience.

    His latest book seems to give one the notion that he is the kind of doctor that will actually do more than just run a CBC and other basic tests looking for inflammation occurring in the body. That he will do exactly want many doctors fail to do and run all the blood work, tests and imaging to rule out other know causes before arriving at a diagnosis of CFS or FM which is great in my opinion.

    It's from this point on that the innuendo comes in with the necessity of convincing the patient to consider if Depression couldn't be at least be (cough, cough) playing a role in their illness. And if so too consider trying an Antidepressant to see if it helps relieve things even if only somewhat (cough, cough).

    He does a similar spill about Anxiety as well. And I was left with the clear impression that only after all the tests and imaging were done and a course of Antidepressants and possibly something for anxiety as well was tried would he give you a Diagnosis of one of the so called syndromes.

    I believe that he's still anchored to the mind body approach. But believes that our symptoms are real (physically felt) hence his title. He even alludes and ponders whether many of those with CFS are suffering from atypical Depression (pg 113-114). Still all in all he has come a long way especially from his first book where he exalted the principles of Propper Sleep Hygiene, (LOLROF) laden with innuendo towards those with CFS.

    In fact that book IMO seemed to be built around the principles of Propper Sleep Hygiene as if it were some sacred magical text that would cure all of those who were tired beyond tried. And of Course in his latest book he pushes CBT and Pacing/GET (though I don't believe that he refers to it as GET) as part of his Integrated Mind-Body approach. Once I considered him a possible government front man. Now I do believe that he means well and has come a long way in his thinking. Although it appears to me that he is still somewhat anchored by old and dated conceptions.
     
  12. Enid

    Enid Senior Member

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    Yes agree IOS - CFS is an opt out label only. Can't we go back to the original term (Royal Free - Ramsay) - Myalgic Encephalomyelitis ME. Good enough then (WHO classifies Neurological) may have to be "tweaked" a little when viral implications finally identified.
     
  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    hmm, I hadn't actually read his book... just his articles which I rate with a B as I always feel there's something lacking. Thanks for the background, all. :)

    as far as syndromes go, pneumonia is a syndrome since it's a collection of signs and symptoms that are caused by an indefinite agent (there are multiple causes).

    as far as "medically unexplained", if ME/CFS* is that, then so is Multiple Sclerosis, Alzheimers, Guillan-Barre, etc., and these diseases are generally not considered MUS, so ME/CFS isn't either. We do not have an ultimate causative agent for any of these diseases, but we do have intermediate pathology. Yes, for the better-researched diseases these are better understood, but we do have a pretty good idea what some intermediate pathology is for ME/CFS.

    It is not medically unexplained because we do know about low function of NK cells, pathophysiology of reduced cardiopulmonary function during PEM, increased cellular oxidative damage after moderate exercise, orthostatic intolerance, and so forth. These are actual disease pathologies. They are genuine explanations for many of the signs and symptoms.

    *I'm using the terms together because CFS is nothing but an artificial construct. There is an actual disease under there. Whether you prefer to call all these post/chronic infectious disease class(es) all with the title of ME or assign several various titles is a matter of opinion. There are some similarities among all, and some differences among them. We can go subgroups or we can go different diseases, but again that's a matter of opinion. Mine lies with the ME Association of America. I realize some others go with Hummingbird Foundation.
     
  14. insearchof

    insearchof Senior Member

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    Hi Desdinova

    The classification of the illness as a syndrome requires all physicans to do this and exclude all other diseases before providing the diagnosis. To do anything short of that would in my view, leave the physican open to a negligence claim.

    I also believe I have read studies that indicated different bio markers and other things - that can assist physicans to differentiate between a person with depression and one with ME and or CFS. I believe some of this information was presented at the State of Knowledge conference held in the last few days.

    Sounds like another book for the trash.
     
  15. insearchof

    insearchof Senior Member

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    Hi Willow

    Whilst GBS is classified as a syndrome by medicine, Pneumonia is not. Pneumonia is no classified as such, because it s known to be caused by infection or inflammation.

    MS and Altzheimers are not are little bit different, as it appears because even though causation is not established, they have some idea of what is going on that is to say, that they have identified the principle area of dysfunction giving rise to symptoms its just that the precise mechanism is not.
    The medical profession is geared around definitions and classifications. When you understand how they do this you understand that what they are saying within that context, is legitimate.

    So looking at the manner in which CFS is defined the breadth of that definition has led to a some very broad research in relation to symptom groups and given that it makes it hard to get to the same point of distinction that say MS is at.

    Further, the definition of CFS is so wide, that it can catch a number of illnesses with varying pathology and ME is one such illness caught within the scope of the definition. This gives rise to broad and diverse pathology which isnt very helpful.

    The pathology you refer to however is not commonly found in all persons who have a CFS diagnosis.

    Medicine starts with definitions and works from there. Unfortunately, you cannot ignore the way CFS is defined and simply discuss pathology without reference to it. Medicine does not work that way.

    This is not a matter of opinion, it is a matter of recognised medical facts and how medicine operates.

    In my view, a failure to understand, acknowledge and work with the rules of medicine, will mean that your arguments will be dismissed and not taken seriously by the medical establishment. If you want to win this war and clean up this mess, you have to work within the frame work of medicine and use their own rules/definitions/classifications if you want to beat them at their own game.

    Otherwise you will get no where fast which is one reason IMO as to why the CFS activist community has not achieved as much as it could have - in the last 25 years.

    ISO
     
  16. Desdinova

    Desdinova Senior Member

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    Unfortunately many physicians do just that (not propperly exclude other suspects). To this day I still haven't had many of the tests nor the MRI that I feel should be done. Just as my Rheumatologist said sounds like FM and has yet to do any real testing beyond that done by my PCP. Hopefully if and when I get my Tax refunds I can order most of the tests I want with the exceptions of Imaging. As for bio markers showing the difference between depression and ME/CFS that IMO if done is only done by experts in the field of ME/CFS. Heaven knows that most Primary Care Physicians nor specialists will not take the time in our five to ten minute visit to order tests for bio markers or review them.
     
  17. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Hi ISO,

    I meant to discuss the actual disease beneath the artificial construct of CFS (which is why I spelled it ME/CFS, which is meant to designate "that condition among those labelled CFS, which is characterized by PEM, cognitive difficulties, brain inflammation, oxidative damage in the cells, low NK cell function").

    Obviously the diagnostic criteria for CFS, as writtten, refers to nothing in particular. However there is a real disease under there. The fact that it is poorly defined by the commonly-used criteria does indeed hamper efforts to understand it, but it does not mean the actual disease is not medically explained, merely because the explanation does not extend to random other conditions illogically lumped in under the same name. It means the health authorities have been taking an unscientific approach by continuing to use completely inadequate criteria which have been repeatedly pointed out as inadequate since Day One, and alternatives repeatedly offered. Biomarkers offered even. Yet so little effort and funding put into exploring any of this that it can be summed up as essentially none.

    If the normal rules of the medical establishment were being followed, we would not be in this situation where folks were pretending CF and ME/CFS were the same. Someone would be not allowing Oxford to be using the same title as Fukuda, at the very least. And that would remove quite a bit of the "inconsistent results" difficulty and we would be much farther along instead of being reduced to debating "such and such an abnormality does indeed exist" all the time.

    The medical establishment itself has broken every rule in the book. Except for the one that goes: "if the doctor cannot readily figure out what is wrong, the doctor and medical establishment must be protected by assuming the problem is that it is the patient's fault for being somehow different and strange, and of course, stressed or depressed."

    MS, by the way, is a diagnosis of exclusion plus signs and symptoms.

    to all:
    I wonder if Dr. Natelson is including CF in his rubric and perhaps that's why he doesn't seem to fully understand ME/CFS.
     
  18. justinreilly

    justinreilly Senior Member

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    I agree that a syndrome is a unique and medically unexplained constellation of signs and symptoms. So why be redundant and use the term medically unexplained syndrome? Because the charlatans want to imply 'non-medical', ie psychogenic and 'unexplainable'.

    Calling ME an MUS at this point is disingenuous, since the charlatans came up with the term MUS as a dustbin and claim all of the syndromes in the dustbin are actually the same psychogenic illness, that you just get a different diagnosis of ME, CFS, FM, IBS depending on what specialist you go to!! Can you see why "MUS" is inappropriate. This dustbin must be thrown in it's own dustbin!
     
  19. justinreilly

    justinreilly Senior Member

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    Desdinova, Thanks for the interesting post. He should be a lot further on in his understanding; it's sad we have to educate him.
     
  20. insearchof

    insearchof Senior Member

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    Hi Willow

    MS might require a doctors to exclude other illnesses - pretty much in the same way as they generally do when reaching any other diagnosis- however, the medical profession does not classify or regard it as a syndrome.

    I appreciate what your saying about there being real illnesses somewhere under the CFS definition. I do not deny that in fact I think there are several, which is why I would like to see the whole classification and definition in all its guises abolished.

    The simple fact is - that the medical profession operate on the basis of definition and classificaiton. The definitions are so wide, that they have inspired research finding a wide range of bio abnormalities that are not consistently found in all CFS patients. Therefore the medical profession say, until we have evidence of causation in a significant number of people - which explains all these symptoms - it will always remain a syndrome. Now that is a real problem and causation to explain all symptoms in all patients is going to be unlikey, when you evidently have a number of illnesses going on in such a widely caught and diverse group.

    The problem in part, is the definition. Its too wide (as you know). It catches sub groups if you like - with divergent outcomes. These wide ranging discrepencies I referred to above, simply feed and give impetus to the classification of CFS as a syndrome holding true and strong. If it was more tightly defined research outcomes would get closer to causation, possibly finding it which would result the condition CFS no longer being regarded as a syndrome. Whilst it remains so broad and the research within it similarly so - the classification will always remain. Medicine operates on the basis of definition and classifications. They always return to this.



    The definition and the classification are definitely problems. If we abolished both tomorrow, doctors would be forced to address symptoms and to look more closely at underlying disease/causes. Researchers might then research sub groups - without the need of doing so under the classification of ''syndrome'' which you might argue, on the basis of how medicine works and operates - more of a problem than the definition of CFS itself.

    I dont disagree with you there. But the way I see it - the only way you will get them to listen - is to know their rules, remind them of them and throw them back at them in a way that works to our advantage.

    Acknowledge what is - according to existing and accepted rules - and work them to your advantage.

    ISO
     

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