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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. R

    Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of CFS

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4320458/ Michael Maes on cytokine subgroups. Lumper or splitter debate still unresolved...............
  2. R

    Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of CFS

    Sorry some of the cytokine data is there in the sciencedirect paper. TNF alpha is close to control levels in their CFS but considerably higher in post IFN alpha resolved fatigue and even more in persisting fatigue. Does pose the question as to what CFS constitutes here incl stage of illness...
  3. R

    Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of CFS

    Hello Research1st Given results of CBT/GET are so poor, even without changing the goalposts, who are these patients? I imagine KCL cohorts are a mixed bag. I ended up in CBT/GET years ago elsewhere and never had a trace of "fear of exercise" etc. I'd like to know about ongoing IFN gamma, TNF...
  4. R

    More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

    Hope so,
  5. R

    More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

    What happens if you want to" validate" and if you think as a CFS interested psychologist? Here's a possible pattern: Women may have higher immune response to stress, illness is a stress, the havoc it wreaks in life is a stress, and the guilt is a stress, and lack of understanding so plenty of...
  6. R

    More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

    Re CFS/ME CBT/GET failed as cure so now re-branding as "functional improvement" i.e. NHS endorses pacing, but not saying so (loss of face etc.). Offers little hope, but can't be accused of letting people down as it offers them so little, so not like thiose nasty Lightning Process boys and...
  7. R

    Relevance of FM test to CFS/ME

    Can anyone comment on these tests? They are for FM but low stimulus elicited cytokines are found in many (most) ME/CFS. https://www.ncbi.nlm.nih.gov/pubmed/?term=Unique+immunologic+patterns+in+fibromyalgia I would also appreciate comments on this plasma based FM test...
  8. R

    More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

    Interesting that this immunological naif does not mention the role TH activation, interferon gamma, IDO etc, might be playing in MS associated depression. The guy just don't know enough.
  9. R

    More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

    Stone on the linked site claims migraine scans are normal. This is not so. He does not label migraine as an FNS, and it's a good job, since recent work has shown it to be an immunologically addressable disease. So why use the disease migraine as an an analogy for other conditions which JS does...
  10. R

    More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

    Frankie and Mickie, they know "the facts" esp about humility, irony oh and candida, of course. Stone says 5% misdiagnosis in FNS. Julia Newton reckons about 1/3 in CFS/ME, so there's a problematic start. You can't label sb as functional on the grounds of having CFS/ME if they have been...
  11. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    I can only see one comment and Valentijn's name. Odd.
  12. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    HAve the blog comments gone or is it my computer/browser/
  13. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    Just posted on there as 88 kacheltjes, but it's disappeared.
  14. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    Resort to psychology should come after proper investigative medicine. This happened with Matthew and good luck to him or any others helped by a psychologcal approach. False illness belief dogma puts resort to psychology it at the beginning.
  15. R

    Any Luck with Shrinking a Fibroid? And, What About My Liver?

    Google nattokinase,natokinase/serropeptase. Various opinions on it, some say a scam, others that it helps.
  16. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    Does she mention hyper-ventilation at all as a pathway between psychological distress and unusual neurological symptoms? Would be interesting to check Mg in pseudo seizures too.
  17. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    Thanks. I know it can get you into trouble sometimes.
  18. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    Marky Are these quotes drawn form the book?
  19. R

    "Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

    It's back to Micky Sharpe's "undeserving sick" rubbish.I.e. "I am caring. You really are ill. Let me help you. You don't deserve to be dismissed by some doctors who claim you are malingering, or exploited by other doctors giving you "false" physical diagnoses and false hope, what you need is...
  20. R

    Cure: A Journey into the Science of Mind Over Body by Jo Marchant

    Seems to me also that this is a crafty re-branding of pacing/energy envelope as CBT/GET. Interesting that time is devoted to discussing whether CFS is physical or mental (or both). Are HIV, childbirth, autoimmune conditions etc (all in the book) subjected to the same preliminary questioning as...
  21. R

    KDM results are back!

    I meant to say antifungal aswell as anti borreal.
  22. R

    KDM results are back!

    Minocycline has some antifungal effect, but dependent on glucose in environment. It penetrates fat thus neurotissue well and so can be used at a lower dose than doxy. But there can be side effects incl lpus type developments. On the other hand it has long been used safely for acne. If you...
  23. R

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    I wonder if they ever tested him ofr Bartter or Gittelmans https://en.wikipedia.org/wiki/Bartter_syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518128/
  24. R

    Rod Liddle 2nd ME article in The Spectator ‘The ME lobby is just a symptom of our stupidity about me

    Rod is right too much stupidity about mental illness and ME. While wanting to bracket us as mentally ill, they show an attitude to our "mental" illness which is light years behind that shown to other, indisputably mental illnesses. If I had primary depression I would be able to talk with a...
  25. R

    Rod Liddle 2nd ME article in The Spectator ‘The ME lobby is just a symptom of our stupidity about me

    My thoughts exactly
  26. R

    How the ME zealots tried to terrorise me Dr Max Pemberton

    They fear loss of face. Why bother when you have two?
  27. R

    How the ME zealots tried to terrorise me Dr Max Pemberton

    As to the aspersion that CBT/GET critics (and we are not all zealots and stalkers - more tarring with one brush) are part of a widely held societal view of mental illness, which holds that sufferers of such should just pull their socks up:- 1) Many of us have suffered great mental distress...
  28. R

    How the ME zealots tried to terrorise me Dr Max Pemberton

    In many ways, it’s similar to how sufferers of chronic Lyme disease, which I wrote about recently, feel affronted at the suggestion that their illness is psychological in origin. Either they have CLD or they don't. Pemberton needs to write sentences that make sense. Perhaps he means people who...
  29. R

    Are endogenous depression and cfs close relatives?

    Valentijn We read the criteria differently. We can go round in circles forever on this. ICC defines PENE and I am happy with that definition, which is imo not as narrow as yours. You are also in no position to tell me my PENE does not sound like PEM. My view is in accordance with ICC as are my...
  30. R

    Are endogenous depression and cfs close relatives?

    Valentijn We can disagree on whether I have PEM, commas etc. Maybe I don't have what you have, some other organic issue, some things in common with you some different, some inputs the same, outputs different. I still believe in the big tent and that ICC supports this. To be trite, the most...