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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. I

    What Happened in the early eighties?

    WHere did you hear that? I don't think there's any doubt that the Royal Free epidemic was ME. Acute onset ME is severe and will cause some degree of transient flaccid paralysis initially, and this is as true today as it was 50 years ago (people that say otherwise are out of touch and not worth...
  2. I

    Exercise and immunomodulation: what type of exercise IS good for CFS/ME?

    Having a bowel movement is too much for me, and I probably shouldn't be typing this. What "exercise" would you recommend? ROTFL. (virtually) It's like saying what type of exercise is good for decompensated cardiomyopathy...
  3. I

    What Types of Fatigue Do I Experience Poll

    How the hell is post-exertional "symptoms increase" just another "type of fatigue"?! Is malaise now a euphemism for fatigue? (god knows it's vague eneough also) This just demonstrates perfectly everything that's wrong with the concept of fatigue in lieu of disease and the fake non-disease...
  4. I

    Why does this illness keep bringing up "bad stuff" to the surface of the mind?

    I can't believe this thread. sorry but i can't agree that it does this. that would sound like a licence for cbt! Since when was 'negative thinking' a symptom of ME? the nearest you can possibly get to the negative thoughts bs is traumatic flashbacks and nightmares but that's merely a mirror...
  5. I

    Retrovirology Publishes Five Papers on XMRV and Contamination

    I do think there's a censorshop and a whitewash and a rather loose coordination of vested interests which is translatlantic in some ways (the international research group behind the original CDC definitions is a case in point as is the rapidity which the UK replaced ME and PVFS with CFS) but I...
  6. I

    Pro-CBT blog people here might like.

    I'm having trouble deciding if your logic there is (slowly) moving in the right direction or not. I think it is, just, but your terminology is still screwed up. I just don't understand why you still want to hold onto an "agorophobia" diagnosis when BY DEFINITION a phobia must be IRRATIONAL. You...
  7. I

    Pro-CBT blog people here might like.

    From that piece... it contradicts itself and it's completely wrong to say that CFS (meaning ME) can "present as depression" (or that it's "treatable"). Or more elaborately, the element of CFS which allows ME to be misdiagnosed is why we want to get rid of the toxic garbage of "CFS". The...
  8. I

    Economic Cost Estimates for CFS Skyrocket

    How common are inpatient hospitalisations for CFS in the USA? What is "other medical supplies and services" that isn't an RX or hospitalisation? That seems a bit suspect. Not that I trust thiese figures particularly, being done on Reeves' population sample definition of chronic fatigue/stress...
  9. I

    Economic Cost Estimates for CFS Skyrocket

    There's already a cost "burden" for the State from disabled people as a whole anyway, and what reaction to that have we seen? Enforced cutbacks of disability benefits, state care and an ever more vociferous pushing of "rehabilitation" like CBT/GET. It matters little if it's not effective in...
  10. I

    Neurological Evidence of So-called 'Somatoform' Disorders? (ie FM, IBS, CFS)

    Excuse me, I didn't say any of that. At least have the decency to not make straw men arguments. So what and whose talking about depression -- there are other inaccurate categories Wessely et al prefer more, like FSS, MUS, somatoform/somatising, affective disorder in general, etc. To portray...
  11. I

    Neurological Evidence of So-called 'Somatoform' Disorders? (ie FM, IBS, CFS)

    Also bear in mind CBT evangelists like Trudy Chalder and the Dutch group have claimed that CBT can repair brain volume loss (presumably a bit like repairing the bodily volume loss of anorexia) which should tell you more about what intrinsic worth "alterations" found on imaging have in this...
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    Neurological Evidence of So-called 'Somatoform' Disorders? (ie FM, IBS, CFS)

    Did you read what I wrote Enid? Where is the evidence in what Cort posted that Sharpe has ceded psychosomatic illnesses to a neurological "cause"? Are you aware that the psychs (and quacks like LP/MT people) already impute the HPA axis and amygdala (which largely processes fear response cf...
  13. I

    Neurological Evidence of So-called 'Somatoform' Disorders? (ie FM, IBS, CFS)

    "Dysfunction" is not the same as "disease", it just means something is not working properly. The brains of people with most "mental" illnesses won't be "working properly", but that doesn't mean there's an unequivocally organic cause (as opposed to a "vicious cycle" or "complex interaction..." or...
  14. I

    Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

    http://www.meactionuk.org.uk/Vade_MEcum.htm CFSAC Testimony: Former Physiotherapist and Occupational Therapist Canadian/American Dual Citizen, Alberta, Canada October 11, 2010 http://www.meactionuk.org.uk/Byron_Hyde_Nightingale_Research_Foundation_Paper.htm...
  15. I

    A video on HIV-AIDS, are there similarities with XMRV-CFS ?

    Please at least check your facts. ME has also been contracted by blood transfusion and followed polio epidemics in the early days. The specific abnormalities don't match. I don't think ME exeprts were stupid enough to confuse it with radiation sickness, which is unlikely to be pandemic now...
  16. I

    Dr Myhill wins back her licence to practise

    Great news at last of rwhat's been a few bleak weeks.
  17. I

    Positive Care Programme

    Is this a satire on irrelevent joke services in lieu of medicalisation of M.E.? This is nothing to do with "care" as commonly defined, it's all about patronising reassurance and a kick up the backside to become "responsible" and not "avoidant", a la Peter White & co. "* 38% visited their...
  18. I

    Home orthostatic training in CFS-- a randomized, placebo-controlled feasibility study

    That's not what they're doing though, they're thinking about ways to *improve* compliance, not consider whether being non-complient might actually be a good idea for some or that there might be a biomedical reason for noncompliance. They're convinced the treatment is or virtually is 100% safe...
  19. I

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    The paper claims the neuropeptide reflects symptom severity yet the only symptoms they could find mysteriously enough were psychological ones, no muscle weakness/fatiguability, pain, sensory abnormalities, cardiovascular, gastroenteric etc. And using Reeves' definition? Not happy at all about...
  20. I

    Making sense of fatigue - Julia Newton editorial in Occupational Medicine

    Regarding Julia Newton's research and her "spectrum of fatigue", you might be interested to see this... http://www.ncl.ac.uk/icm/research/publication/71614 Right, so exertional intolerance is all due to NMH -- we obviously knew that anyway. Furthermore, NMH is all or mainly due to faulty...
  21. I

    The Non CFS 'CFS-ers'

    Though there's no gaurantee "we used the Fukuda criteria" actually means they applied each letter. I don't think Fukuda is much better than Oxford because it allows this dishonest application and because it contains no physical signs. It doesn't even require exercise intolerance (or "PEM" if you...
  22. I

    Fatigue and MS

    We need more fatigue research and validification of fatigue research and fatigue scales like a hole in the head. When medicine starts researching fatigue in a disease it's a sign of failure (or rarely success) or lack of progress, much in the same way as if they'd start to research "dirtiness"...
  23. I

    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    "Pioneering help"?! If you're being sarcastic you need to make it clearer. "I think that psychological and social factors often will affect the way allmost all illnesses develop, disable and are treated." You can read here about what the BPS model seems to think these factors are...
  24. I

    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    It's quite a good letter - credit where it's due. (If it had been AfME they'd have called the study "interesting..." and manage to say it was "too much emphasis" or some such crap, while in the next sentence asking for more CBT therapists...) I'm still not sold on whether the CAA really get the...
  25. I

    Physiological cost of walking (Rafferty, Marshall, 2009)

    Why does it surprise you to have an abnormality on walking, given that it's a demanding thing for most sufferers?
  26. I

    BBC online: Dorset woman with severe ME 'left to rot by the NHS'

    Well most people who go into a nursing home are expected to pay for it themselves or lose their property etc. 50K a year is certainly more than the vast majority of severely affected ME sufferers get spent on them. Her daughter claims 98% aren't as severely affected as her, well, maybe 80-90%...
  27. I

    BBC online: Dorset woman with severe ME 'left to rot by the NHS'

    Romford only does CBT & GET dressed up by the various euphemisms and "stakeholder" rehabilitation specalisms we see above. There used to be a web page with testimonials, not sure if it's still around, with the usual mix of people lionising GET and a few pointing out that the ward was "noisy and...
  28. I

    This will cheer you ladies up

    As I think I said, if someone is careful enough to care about food intolerances they're probably already reading labels and experimenting already. If they're reacting to something so small in quantity it's a contamination then that's probably an allergy rather than a food intolerance, which is...
  29. I

    This will cheer you ladies up

    The other point I would make is that if it's so hard to find/source "good" chocolate then that's another reason why it's not such a great idea. And I'm sorry but saying very sick people should go on some ridiculous psuedo spiritual mythic quest to find the rarest most hard to get "perfect"...