1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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NYT: Tuller: "Fallout from Fatigue Syndrome Retraction" and Science Times Podcast

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CBS, Feb 6, 2012.

  1. currer

    currer Senior Member

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    Hi.
    At the Invest in ME conference, Fluge and Mella said clearly that they felt the most probable reason for the non-response of a third of their trial subjects was the short period of the trial which only allowed one or two infusions of rituximab.
    They felt that the rituximab was bringing "something" down and the reason that some did not respond within the time frame was that further infusions and more time were required to allow the blood levels of this "something" to lower, enough for a visible and measureable reaction to become apparent.

    They already had extended the time period of the trial once, as it became apparent in its course that patients were responding, but after a longer delay than initially anticipated when the trial was designed.

    I disagree absolutely with all statements of the disparate nature of ME. ME is no more disparate or difficult to diagnose than any other disease, as anyone with any experience of patients with this disease can verify.

    The myth that ME is unusually disparate is a political statement designed to frustrate research into a medical condition which presents, and can be diagnosed, according to the rules that apply equally to all medical conditions.
    (This stupid remark claiming heterogeneity always infuriates me.)

    As Mark says, if ME is disparate, lets identify the sub-groups, and get on with researching them as we would any set of diseases.
    But no, disparate is only used to obscure definition and prevent any analysis of this disease.
  2. Firestormm

    Firestormm Senior Member

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    Cornwall England
    I don't disagree, but of course it relies on being able to clearly identify (and separate) those presumed sub-groups in order to disprove (or not) the heterogeneity. ;)
  3. currer

    currer Senior Member

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    Firestormm - if you cannot clearly identify those sub-groups - you HAVE NO BUSINESS sayng that ME is heterogeneous. Where is your proof?

    (not you personally, of course.)
    Angela Kennedy likes this.
  4. alex3619

    alex3619 Senior Member

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    Hi currer, personally I think ME is probably one disease, with CFS being that plus depression and who knows what else, mostly from misdiagnoses. However, it is not proven that every ME epidemic is the same disease. Symptoms did vary epidemic by epidemic. They might be the same with different complications, or there might be several very closely related diseases grouped as ME. Keeping that in mind in designing experiments may help researchers spot contrary data and identify subgroups. It isnt hugely likely, but it shouldn't be ignored.

    On the other hand, in an Oxford CFS group I expect most will have exclusionary depression and be misdiagnosed.

    Personally I will be very happy if (almost?) everyone responds to Rituximab. Its about time we had a treatment. That is in part what Phase 3 trials are about: to try to answer that question as well as give a better understanding of safety. Phase 2 is more about: does it really work? Phase 3 is more about: what works best?

    Bye, Alex
  5. Enid

    Enid Senior Member

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    I've no doubt it's one disease - full blown ME at one end (encephalitis) or the damage remaining from the initial onslaught. Oh and something not diagnosed persisting.
    justinreilly likes this.
  6. barbc56

    barbc56 Senior Member

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    I don't think we have enough knowledge to know if ME/CFS is one condition or not. I expect because of the poorly defined definition of our condition, there are subsets. Some people present with different symptoms, some don't have documented medical tests that show things are abnormal, but that doesn't mean they don't have CFS. I think the definition is what causes the disparity.

    BTW, Mark, I found your response to my post rathe reactive and negative. I know we have different views on things and maybe that is what you were responding to?

    Would you please moderate yourself?

    Fortunately, I have thick skin.

    I am also heartily disappointed in some of the rude responses Red Ruth received.

    Sometimes it helps to take a deep breath before posting.

    Thank you. ;)

    Barb C.
    Snow Leopard, Firestormm and TessDeco like this.
  7. Firestormm

    Firestormm Senior Member

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    Let's also not forget the arbitrary way in which many 'diagnoses' are afforded. It is 'assumed' that diagnosticians adhere to their 'training' and apply the criteria laid-down by e.g. NICE. But outside of research, what are the odds that any of us - collectively - have had a specific criteria for 'ME' applied and not simply afforded one by an individual 'expert'. Honestly.

    Remember that recent research I posted I think that showed 49% of referrals to specialists (one a psychiatrist and the other an infectious diseases immunologist (if memory serves)) did not have 'CFS/ME'? The mind boggles. And then we have to assume - I think anyway - that some patients are self-diagnosed... and more uncertainty must be in the mix too...

    So when they do - one day - come up with a diagnostic marker (holy grail?) or several, methinks some will be getting alternate diagnoses and the 'big pot' will become smaller even before sub-categorisation (if that even proves valid). The discovery of a marker will not be 'good news' for all of us - although if it reveals a better and more relevant diagnosis then 'thumps up' from me. I just wouldn't want folk to be any more left in the cold because they didn't have 'CFS/ME' than if they did.

    I suspect many folk assume they have 'ME' and may yet be disappointed. Let's face it there are no 'tests' specifically, only those conclusions reached by expert individuals. As I suspect many with a diagnosis of CFS (many more I should say) could in theory 'actually' have 'ME'. Quite the dilemma really... If you believe there is a major difference between the 'two'. Personally, I couldn't care less what I 'have' so long as it leads me towards better treatment, care and management.

    Chronic Fatigue Syndrome, Myalgic Encephalomyelitis and even Myalgic Encephalopathy - all recognised as being the same thing by the health authorities* and I would imagine by the vast majority of people with the diagnosis.

    (*I was a tad confused by Cort's piece which said the NIH now recognised 'ME/CFS' as the preferred term, whereas the CDC distinguishes apparently between the two (in line with the WHO?). And then there's the WHO themselves of course. 'If only' the WHO merged the two or linked them I wonder whether there would be as much consternation? Hypothetically.)

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