1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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Webinar on Chronic Pain Conditions & the Overlapping Conditions Alliance

Discussion in 'General ME/CFS News' started by jspotila, Apr 23, 2010.

  1. Dolphin

    Dolphin Senior Member

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    I think this is a good point. As long as it's not just questionnaire research/research looking for psychopathology (of course).
  2. Dolphin

    Dolphin Senior Member

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    Report on webinar?

    Anyone hear anything they thought was interesting? I don't see myself have the time/energy to listen myself.

    I forgot to say that one good thing about the webinars is that they are available long-term - the benefit isn't just at the time they were on, as they are recorded. Thanks to the CAA for those they've already put on.
  3. Mithriel

    Mithriel Senior Member

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    In general, there are a finite number of symptoms, that is why you have to look for the cardinal symptom in a disease.

    A headache can have many causes and diagnosis is the art of discovering why the headache is happening. The psychosocial school have chosen to disregard this aspect of medicine and assume that having similar symptoms means people have the same disease - somatisation.

    I think that patients can fall into the same trap (though less culpably). I remember years ago coming across a article about Candida. It had a list of general symptoms like tiredness, malaise and said if you had these and also had ever had antibiotics you probably had Candida overgrowth.

    The cardinal symptom of ME/CFS is that exercise causes an exacerbation of symptoms and generalized malaise. The ill effects can be delayed up to four days and recovery is abnormally prolonged, even impossible.

    By concentrating on the things that make us different from other illnesses instead of the things we share, like fatigue, research could take leaps and bounds. The sooner the likes of the CDC realise that the better.

    Personally, I think my pain is not chronic the way it is in other illnesses, but is an active process caused by production of lactic acid. If we are going to be part of projects with other conditions that have significant pain, I hope that will be remembered.

    Mithriel
  4. Hope123

    Hope123 Senior Member

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    This was brought up earlier and I don't have the energy to backtrack but the point about illnesses being taken as something else initially but later recognized as the diverse manifestations of one illness is astute.

    The conditions involved like FM, IBS, TMJ, interstitial cystitis, etc. are in and of themselves diagnoses of exclusion or are unclear diagnostic entities. (I especially am aware of this case in IBS as one of my former classmates specialized in IBS research.) For example, someone with lupus might have joint pains, rashes, seziures, kidney problems. If we didn't know about lupus, we could just as easily say that this person had several co-morbidities (making it up here but for example's sake, we could say this person has arthritis, rosacea, etc. as co-morbidities) when in fact the base illness is lupus and this explains all this person's symptoms.

    Focusing on unique aspects of this illness, as Mithriel wrote above me, is extremely important.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    I agree 100%.

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