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Prof Newton and Prof Ellis transcripts from talk today 26th May 2015

Discussion in 'General ME/CFS News' started by eafw, May 26, 2015.

  1. eafw

    eafw Senior Member

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  2. eafw

    eafw Senior Member

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    Jason Ellis talk doesn't seem as clued in, but hard to judge from such a quick overview.
     
  3. ahmo

    ahmo Senior Member

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  4. alex3619

    alex3619 Senior Member

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    There is a presumption that fatigue in other disorders is the same. That is, fatigue is similar across all disorders they are looking at and that research must be transferable from disease to disease. This is based only on similar answers to questionnaires. I hope they are not locked into this idea. It might be right, but its likely its very different in specifics between diseases.
     
  5. lansbergen

    lansbergen Senior Member

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    What is fatique?
     
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  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The autonomic stuff is interesting (but logical). We know that Dysautonomia can lead to profound fatigue, and Dysautonomia is not ME specific but found in many other conditions.

    My pet peeve is the reference to 'fatigue' remains when describing ME. Because of political correctness, it remains relentlessly promoted as being a core ME pathology sign. Yet it's silly in my view, and not sensible to keep repeating the word. The f-word (for ME) de-legitimizes the severity and the danger the ME patient may face when faced with a life-long dreadful disease. (E.g. Some with chronic severe ME end up with immune suppression and cancer, some even die). Thus, naturally, hearing your incurable disease reduced to 'fatigue' is not only insulting, it's potentially dangerous for some, as physicians may well get wrong idea about how ill the patient is, and they might feel is only 'tired' if they do too much - hence the word CFS is despised by most with ME, severe or otherwise.

    The reality of living with ME, is not experiencing 'fatigue' (fatigue is tiredness or exhaustion), but a a specific post exertional relapse reaction where the reaction can have profound affects on the: cardiac/respiratory, central nervous system, immune response, hormones etc , specifically from minor mental or physical exertion. Naturally, as the MRC and NHS promote graded exercise to reduce symptoms (LOL), they're never going to admit this or state it, as it makes a mockery of the grant applications they are funding and the public will ask questions what on earth is going on and why there is no basic treatment since 1969. Thus fatigue, becomes a stupid word, and out of date, backwards.

    ME 'fatigue' (misnomer) actually produces a cellular exhaustion unlike any other condition I can think of, even MS. Thus as Alex timely and intelligently suggests, it's perhaps a bit odd to mix in ME 'fatigue' with other 'fatiguing' conditions where the etiology is then presumed (by the researchers) to be shared, on the basis ''they have fatigue too'', kind of scenario.

    If you look back, part of the UK 'biomedical' funding was snatched from ME to Sjogren's syndrome, on that basis. Sadly for PWME, any 'evidence' would thus 'prove' that ME is not unique - what is actually needed to legitimize ME more, but is just an experience other people have. Clearly it's not, and if you talk to veteran ME friendly physicians, they also agree they've never seen anything like ME before either. (Important to note).

    The British psychiatrists still hold a religious belief about 'Chronic fatigue' (F48.0) as a correct description for ME (G93.3), but recent research shows that ME is probably an accurate term, especially as Chronic Lyme or novel variants or other non Borrelia co-pathogens look like they will explain many cases of ME (NB: Encephaloymeltiis can occur in neuro Lyme). So technically, you can have ME if you have neuroborreolosis.

    So lets drop fatigue, and keep with at least severe or subsets of ME, being explained, by a chronic infectious state. I say this as...

    The British and other government talking heads in Europe are still in denial and clinging onto the 'post infectious' theory resulting in 'Chronic Fatigue' (which they believe is ME), yet if you look at the results of patients on this forum, many patients who can access private labs, are actively infected with a whole host of infections (also found in AIDS), which demonstrates they become immune suppressed (over time) and thus, by logic, ME sufferers would carry multiple active infections and never harbor a ''belief'' in a virus, or a ''hit and run'' event that has now gone away.

    Most disappointingly, none of this biomedical CFS (fatigue) research money is testing people bedridden, for decades, with actual proven damage from relentless multi decade ME. (Hypothyroidism, Arthritis, Adult Growth Hormone Deficiency, Osteoporosis, Heart Failure, Cysts/Tumors, Endocrine disorders, Neurological disorders, Immune suppression). Instead, for decades we have had researchers test people with 'Chronic Fatigue', and we have a mixed bag of results. I wonder why?!

    Even if they test housebound people who are 'severe'. Severe means nothing in medicine without evidence. These sickest of the sick people, historically, are filtered out of research studies, because they exceed the criteria for CFS.....which means ME, is never studied!!!!!

    It is, what it is, and this is why in 2015, beliefs like below remain:

    Source: http://www.gresham.ac.uk/lectures-and-events/standing-up-for-fatigue

    All this is saying is people with a genetic defect, who get stressed or are 'influenced' into their beliefs, who catch an undisclosed bug, get CFS/ME due to a perfect storm. Clearly, that is just reductionist and although maybe accurate to believe in the 1990's is now scientifically inaccurate. More worryingly for the future, it is what the British Psychiatrists have been saying since day one.
     
    Last edited: May 26, 2015
  7. Snow Leopard

    Snow Leopard Hibernating

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    The suggestion of dichloroacetate is interesting... I'm not sure it will help though, if there is an upstream issue with fatty acid metabolism (eg crossing into the cell, rather than into the mitochondria). It will potentially give some clues however.
     
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  8. Valentijn

    Valentijn Senior Member

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    These people are utterly clueless regarding ME/SEID, and are not sounding very bright at this point. They also are agreeing with the Dr Alastair Miller viewpoints, which are completely incorrect on nearly every relevant point.

    It's nice that they're researching OI problems in chronic fatigue, but they need to extract their heads from their anuses first and learn something about the disease they purport to study. Perhaps by starting with the ME/SEID definitions used elsewhere in the world, and continuing with the research disproving their utter "no tests for it" BS.

    I'm extremely disappointed that they continue to not only believe that propaganda, but that they are willing to spread it as well.
     
    Last edited: May 27, 2015
  9. alex3619

    alex3619 Senior Member

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    Let me run an hypothetical thought experiment I have done before. Lets presume nobody knew what caused cancer yet. Its a chronic fatiguing illness. It also causes lumps. So for decades it has been called Chronic Fatigue Lump Disease.

    Now it is the case that CFLD does kill some people, but some people get better too. So its been argued that the reason most don't get better is they don't want to. Impressive paper after paper is published that shows that non recovery is associated with certain personality traits, so personality must be the cause. Its a mental condition. (Sadly, these papers exist for cancer of all types in the real nonhypothetical world - it really happened.)

    Lets cross check this with experimentation. Sure there are lumps, but these do not matter because no cause for the lumps can be found.

    Looking at blood tests and standard tests in a large patient cohort, no single factor could ever be found to be causing this. Therefore nothing caused it. If nothing caused it then it must be psychiatric. Case closed. (This is what I call the psychogenic fallacy, more formally called the psychogenic inference.)

    OK, compare this to the real world. Cancer is a fatiguing illness that is highly heterogeneous. So is CFS. Even ME may be heterogenous, though currently it looks like maybe only two diseases that are similar.

    Now, take a cancer cohort. How are you going to find ONE single cause when its a mix of disease with many different etiologies. Ditto for treatments. One treatment for cancer? Surely that has to be CBT ... ok, ok, we can do surgery or similar (e.g. radiation) and kill the lumps, but this does not always cure the fatigue.

    If a doctor these days, in the real world, were to claim that cancer was a single disease, and it could be cured with CBT on the basis of questionnaire answers, how long do you think the doctor would operate before the quackery label would apply?

    Yet somehow this is acceptable for ME. I have not even looked at the issue on how ME is conflated with CFS.
     
  10. msf

    msf Senior Member

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    The last paragraph ahmo quoted is awful science, it's more like science-by-committee, where the committee includes a couple of charlatans and a shill for the insurance companies.
     
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  11. msf

    msf Senior Member

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    And this is the foremost biological researcher into ME in the UK.
     
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  12. msf

    msf Senior Member

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    Forgive me if I do not share Prof. Edward's optimism about ME research in the UK.
     
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  13. msf

    msf Senior Member

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    And there's the old canard about it occurring 'after a precipitant such as a viral illness.' Are doctors actually taught to be challenge claims that are unsupported by evidence?
     
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  14. msf

    msf Senior Member

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    taught to challenge, rather.
     
  15. msf

    msf Senior Member

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    Oh, and in case you join the thread, Prof. Edwards, this sentence suggests that Prof. Newton, at least, is using the NICE exclusionary criteria, which include Lyme:

    There are no pointers on examination or history to an alternative diagnosis and in all patients the blood tests performed in line with the NICE guideline are normal.
     
  16. Scarecrow

    Scarecrow Revolting Peasant

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    I don't think that's a balanced representation of Newton's views (on this occasion at any rate).

    This is what she actually said in regard to the questionnaires, the experience of 'fatigue' across different diseases and understanding of pathophysiology (my bold):
    I agree that this bit "This is interesting because it suggests that the fatigue experienced by a patient with the autoimmune disease primary biliary cirrhosis is the same as the experience of patients with CFS, fatty liver disease or Parkinson’s disease, for example." could be interpreted as a suggestion that all fatigue is the same but I doubt she means it like that. For example, she briefly cited cytokines as other aspects of CFS/ME pathophysiology elsewhere in her talk. But orthostatic intolerance is her thing. You're going to talk about what you know, right?
     
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  17. Bob

    Bob

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    I love Prof Newton's ME/CFS work. It's ground-breaking and I think we're very lucky to have her. Her background (professional interest) happens to be in 'fatigue', and she became involved in ME/CFS as a consequence of her other work in illnesses that include an element of fatigue. So it's her interest in 'fatigue' that brought Prof Newton to our field. We wouldn't have her otherwise.

    I agree with others that to equate ME/CFS to 'fatigue' or to equate/compare ME/CFS to 'other fatiguing illnesses' demonstrates a misunderstanding of ME and its complex nature. But we're a heterogeneous bunch, of course, and perhaps a subset of Fukuda/NHS/Oxford patients do experience a relatively straightforward feeling of physical fatigue without other complications. But many of us don't even think about fatigue in relation to our illness. We're too busy dealing with the flu-like symptoms, the neurological symptoms (loss of brain function etc), the overall incapacitating sense of sickness, the physiological exhaustion, and (for many) the various patterns of persistent pain.

    I find it impossible to define my symptoms exactly, in a nutshell, other than to say that I just feel profoundly and persistently 'unwell'. I have flu-like malaise, but that doesn't define my illness. I display 'sickness-behaviour' but that doesn't define my illness. All I can really describe with any sense of accuracy, if asked to describe it in a nutshell, is the overriding sense of 'dread' that occurs when a relapse takes place. The onset of profoundly uncomfortable symptoms, and a deep sense of physical 'unease', along with the challenging physical and mental incapacity, makes the whole experience one of dread. However, 'dread' is not a helpful description of the illness, in any way whatsoever, and I'd be diagnosed with a mental health disorder if that's how I defined my illness. I think perhaps it's partly this difficulty of defining the subjective experience that has led to many physicians believing that ME is a mental health issue, and why the illness is so widely misunderstood, and why the psychiatric lobby have managed to get such a strangle-hold over an immunological illness.

    But, actually, there's so much excellent literature describing the symptoms and nature of ME, and the subjective experience of it, that it seems rather silly for us even to be having this discussion. I think the FDA's "The Voice of the Patient" report is an excellent starting point for anyone who wants to learn about the nature of the illness.

    Instead of focusing on fatigue and 'other fatiguing illnesses' I believe most progress would be made by focusing on immunology and comparing it with other immunological illnesses. That's what various other research groups, such as the OMI, are doing. (Other patients may prefer a focus the neurological aspect of the illness.)

    But, having said that, we're a heterogeneous bunch, and all honest biomedical research efforts are welcome. Answers may come from unexpected places. And Julia Newton's work is incredibly fascinating, and potentially invaluable.
     
    Last edited: May 27, 2015
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  18. Valentijn

    Valentijn Senior Member

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    I'm starting to think that British research has been hopelessly and irreversibly polluted by the BPS crap. Even very intelligent researchers can't seem to grasp that the Oxford criteria, and the recommendations derived from it, have absolutely no relevance to ME/SEID.
     
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  19. alex3619

    alex3619 Senior Member

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    I do like the research being done on in vitro muscle cells by Newton et. al. We need that kind of research, and it creates a testbed for rapid testing of therapies.

    Fatigue is one of those very vague words that really should not get used in any scientific debate. Its too imprecise. Hopefully with more research they can start talking about very specific and verifiable things instead.
     
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  20. Gijs

    Gijs Senior Member

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    I still wondering if the ANS (overactivity) is due to compensation or the primary symptom for a subgroup. For me this is the one million dollar question. Abnormal activity of the ANS could explain everything in ME.
     
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