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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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  1. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Some more articles on DOMS and exercise. http://www.ncbi.nlm.nih.gov/pubmed/12617692 http://www.unm.edu/~lkravitz/Article%20folder/domos.html Therefore it is vitally important that patients and controls in any study of 2 day CPET testing have similar levels of previous exercise, because...
  2. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    As an addendum to the above - Look, regarding Snell's results and the findings he has published in patients who were claimed to have ME/CFS - none of them will mean anything if another group of researchers does just a single study showing you can get the same results in very sedentary healthy...
  3. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    I've looked through the whole of pubmed searching for any number of combinations of "consecutive CPET" or alternative words and couldn't find any studies of 2 day tests. If you actually read some of the articles I posted above - which review the whole area of CPET testing over 65 years - they...
  4. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    You mean sixty-five years of single day CPET testing, where Snell wrote - CFS patients were normal and showed no abnormality. I really don't understand your point. Show me the evidence from 2 day protocols over sixty-five years? The point is that this 2-day portocol is new. And I fully agree...
  5. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Professor Edwards has declared an interest in researching ME. Someone above mentioned - if people could make-believe illness surely millions of people would be doing it. As I said, studies have shown that 75% of insomniacs have no objective evidence of insomnia. And a recent study of food...
  6. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Why is the ME/CFS community marginalised? Is it because so many people have now been diagnosed with the illness who just don't have it (according to the Leonard Jason et al) that the illness itself for the most part has become something more marginal? If upto 90% of people claiming to have...
  7. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    @Scarecrow Exactly - that is what Professor Edwards should be taking up with Wessely. It is Wessely's Oxford criteria that have resulted in so many people stuck in this label - people who Wessely admits do not fit - but at the same time Wessely says nothing publicly nor does anything to...
  8. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    @Bob and @alex3619 I don't think you have read my posts, I posted a link to both those papers myself. As I said just a moment ago, Furthermore, since I have robustly shown, papers previously posted, that severe inactivity produces a marked inflammatory cascade from maximal exercise - we can't...
  9. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    You read the posts on the other forum. There were plenty of CFS/ME patients who had abnormal 1 day CPET tests. Snell et all just dismissed their results. I don't think it will add costs. Also, is this the paper from the other group to which you refered...
  10. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Another group ... okay, I'd like to see that! Have you got the link to the full paper? The only links I can find previously are to Phoenix Rising forums, these are not peer review medical papers. I don't understand the problem with giving me the link? Look, we all want better research on ME. We...
  11. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    What they claimed was that she was a danger to herself because of her belief she had ME, her weight loss etc. As I said, this was wrong, Sophia had really severe ME, but just imagine the psychiatrists had seen many patients who believed they had all sorts of conditions and were consequently...
  12. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    They were section correctly because they made a recovery! Plus their parents and the patient agreed afterwards it was correct. But thank you for misrepresenting me Valentijn. Your logic is also very disturbed in that you imply that a qualified person can correctly determine psychiatric illness...
  13. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    I know lots of people want to make this a black and white issue but it isn't. What happened to Sophie Mizra was terrible, horrendous, but I know of more than one person (first hand) who had a diagnosis of ME who was sectioned correctly because of severe psychiatric illness (which wasn't ME)...
  14. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    @Valentijn and @alex3619 - that is not what Snell wrote - he said there was "The lack of any significant differences between groups for the first exercise test." He didn't say these were "recovered" patients or "mild patients". At the very least comments like Snells do more harm than good...
  15. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Did I say that Isabelle? No. Please don't ridicule my suggestion as a way of dismissing what I said. What I actually said was that Wessely is fully aware that there are patients labelled with CFS/ME who are organically ill with serious physical diseases - I suggested that rather than argue...
  16. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    This is exactly my point - I don't know who Dr Snell is testing, but it sure isn't the people I know with ME/CFS. The people I know have abnormalities on a 1 day test. It is unthinkable that they could do another test on a second day. Dr Snell is trivialising this illness with very dodgy claims...
  17. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Have you ever spoken with Simon Wessely? I'm no fan of the man, but having been around this illness for over 20 years, I have found that not everything that is written or said is fair. Plus, there is another angle here - Wessely has stated that there are sick people misdiagnosed with "his...
  18. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Very true, but it goes both ways for patients, too.
  19. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Interesting argument - but ... We do see lots of these duality "real+belief" based diseases mixed up. ADHD, Fibromyalgia, are just two. In some locations in the USA ADHD got so out of control that 30% of children were given a diagnosis! How did the really sick children with ADHD feel about...
  20. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    I haven't seen those - have you got the link? I have to say, however, given the short-comings of his previous unsupported claims, I remain doubtful - but nevertheless open to the possibility.
  21. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    The statistics that were quoted come from the research papers of others - It was Dr Crawley who stated that 90% of her patients recover. Dr Crawley further stated that the incidence of ME was 4.7% of the population - Wessley claims 2-3%. These figures are 10 times higher than those of Jason et...
  22. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Look, I know you don't want to read it, but the results from Snell fly in the face of everything everybody knows from exercise research - not to mention common sense. If a sedentary person, not to mention an extreme bed-rested healthy control, does an absolute maximal exercise test - they...
  23. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Thanks @Kina for moving this discussion for clarity. @Jonathan Edwards asked a question regarding the validity of original paper - the question is simply this - do inactive people have a drop in VO2 on 2 day consecutive CPET testing? There are scores of articles questioning the validity of...
  24. K

    IGM HIGH?

    The easiest way to get antivirals in the UK is 1)pay privately and go to one of the many private ME doctors 2)persuade your GP that you don't have ME, but you may have a persistent herpes virus infection. Possibility 2) above is actually not that difficult, especially if you have positive blood...
  25. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Has anyone actually read the Pacific Laboratories paper? www.hhs.gov/advcomcfs/.../presentation_10132010_snell-stevens.pdf (google for full URL) www.cfids-cab.org/MESA/VanNess.pdf To summarise - As I explained above, what they are measuring is not VO2max but "PeakVO2". To explain the...
  26. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    It's terrible and I didn't say she was right. Please read what I wrote. But the sad fact is that Esther Crawley sits on the MRC (Medical Research Council) and it is also a sad fact that her "overdiagnosis" view of the disease is the one used for diagnosis of ME in UK specialist centres - the...
  27. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    @Mij the video adds nothing to what I have said. Of course patients with organic disease under the label of ME/CFS are made worse by exercise - that has nothing to do with the shortcomings of a 2 day CPET test. I fail to see what your point is. Please read my post.
  28. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Dear Professor Edwards, there isn't an exact replication study of "2 day CPET" per se, since that exact protocol is a new idea, Pacific Labs?. However, there is a body of literature on inflammatory markers 24h post-exercise in bed-rested subjects, both human and animal. These studies show...
  29. K

    'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

    Sedentary heathy controls are not a proxy for over-bedrested patients. Low blood volume, POTS, etc do not occur unless there is excessive bed rest. Sedentary just means "normal", not "athletic". However, studies using deliberately bedrested healthy controls have shown 2 day CPET testing to show...
  30. K

    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    No, @Bob there aren't any reproducible studies that show objective marker in a majority, you need to think again. Instead, there are large studies (with 200+ patients) where the majority have no objective markers. And there are studies by very small research groups where they have pre-selected a...