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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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Search results

  1. D

    A systematic review to identify the definitions of recovery for paediatric CFS or ME (Moore et al.)

    with a diagnosis of CFS/ME.....duration of illness from 3 months I thought all criteria required > 6 months illness? Oh and you have to love this: The recovery rate ranged from 25–100% in those accessing treatment and 4.5–100% in those without specialist care. Which apparently means that...
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    "CBT and GET are effective"

    Makes me wonder - I do not recall the exact results of the pace trial but were they not similar for CBT and GET? Is it reasonable to expect two completely different (on the surface) treatments to get the same moderate increases? Does it in fact provide more supporting evidence for the theory...
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    How would you describe your brain fog?

    I do frequently have the water in brain, weight on my head sort of brain fog, but I am able to quite closely gauge the effect it has on a specific task because I write computer code for a few hours most days. On a good day with drugs I can quickly assess a bug/change request, identify a...
  4. D

    How long does your PEM last?

    My 2p would start with supporting the view that it is hard to separate the different "reactons" I get. If I push way past my limit (especially but not solely via physical activities) then I can get some immediate symptoms but I think of that as more "normal" (albeit more extreme than I ever...
  5. D

    Your thoughts on Hookworm therapy?

    Fwiw a friend recently diagnosed with MS has been put on a double blind trial of this treatment, run by local NHS hospital so I don't think it is "out there" as therapies go. http://www.nottingham.ac.uk/news/pressreleases/2012/february/hookwormtrial.aspx I am not qualified to comment on Hip's...
  6. D

    Long-term follow-up of multi-disciplinary outpatient treatment for CFS/ME (Derby, UK)

    I attended an outpatient ME/CFS clinic at Derby. No idea if the treatment I received reflects what they are testing here, as it was a few years ago but fwiw: The treatment consisted of about 6 group sessions of an hour or so each where they *talked* to us about various things like pacing, GET...
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    BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

    I think this goes a long way to explain this http://blogs.telegraph.co.uk/technology/marthagilltech/100013845/me-yuppie-flu-and-why-those-with-treatable-diseases-get-more-sympathy/ though as others have said it is disappointing when people one (perhaps naively) assumes to be rational and...
  8. D

    ADHD drugs reduce ME/CFS cognitive dysfunction

    Thanks for that Barb, - I have just started trying modafinil (provigil) on my work days and it is having a huge positive effect so far. Do you remember what dose you tried? I tried one tablet (200mg/ug?) at first but it didn't seem to work so I tried two which is the maximum recommended dose...
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    Huffington Post: Disability Benefits: Why the UK has to reinvent the workplace

    No disrespect meant but I really cannot fathom that logic. Surely the same would apply to anyone taking a job - you're potentially displacing someone else. It also is not how I believe economics works - what is best for everyone is that the system has maximum efficiency. If I displace another...
  10. D

    How the government bought off the advocacy movement

    I think you must qualify as the Witch King of Angmar surely? ;)
  11. D

    ME/CFS B-Cell Study/Rituximab Implications

    Really sorry to hear about your situation, I do feel the frustration of the slow progress as I am sure we all do, though not all in quite as stark a way as you :cry:
  12. D

    ME/CFS B-Cell Study/Rituximab Implications

    While I understand the frustration, IIUC replication is a key part of the scientific method, indeed lack of replication of some interesting results has arguably been a problem for us in the past. I have been lurking on another "bad" forum and there was an interesting post about how science...
  13. D

    Lady Mar writes to Prof Wessely

    Not wishing to put words in beaker's mouth, but I read that bit completely differently - as people who are working and do not want their employer/colleagues to know they have ME (for fear of prejudice), not people who could work but do not want to and want to keep that from former colleagues or...
  14. D

    ME: bitterest row yet in a long saga

    I agree, it seems especially ironic given that SW himself did a study that claimed to find no elevated hostility to Psych among CFS patients (I make no claims to have checked the validity of the study): Warning and apology: links to SW website, do not follow if you prefer, if you do replace...
  15. D

    Professor Simon Wessely says he is misunderstood

    Again the conflation/confusion of a complaint of mislabelling with a suggestion of non-validity <sigh>
  16. D

    Lady Mar writes to Prof Wessely

    Valid point and I do try to do what "armchair advocating" I can by way of supporting votes, petitions etc. I guess I was guilty of excluding that from the term advocacy, thinking more of the more visible versions that some people do so well and I fail abysmally at :) ETA: the aviva vote is...
  17. D

    New CFS and inflammation paper

    Thanks Firestormm, I have been lurking and reading with interest in between I promise :) I think I am less inclined to post when I am feeling better as I am focused more on "Real life", whereas in a slump I tend to become more laptop focused . Not sure that is a good thing, just an observation...
  18. D

    Professor Simon Wessely says he is misunderstood

    Bit of a cross-post but this was probably the better thread for my other post, just wanted to register a hypothetical vote for positive advocacy over negative. I believe there is enough promising research and initiatives for advocates to be getting behind right now. Complaining and blaming...
  19. D

    New CFS and inflammation paper

    Plus other factors, such as any possible gender imbalance in tendency to use internet, use forums etc. Don't want to be mr negative but I don't think that figure would have enough validity to improve our understanding. I can't provide any citations but I did get the impression that the imbalance...
  20. D

    Lady Mar writes to Prof Wessely

    Too rough to contribute much, but just to say I agree that I see us as being at a point where much encouraging research seems to be moving forward, so I would rather any advocate of mine was "pushing the positive forward" rather than "pulling the negative back". I understand the frustration...
  21. D

    Psychiatrists Invent health preoccupation disorder

    ^ this ^ I have three young children, If I can drag myself to their adulthood without becoming totally bedbound I will count that as a win. Of course would love a cure but I cannot take any more risks on things that may drop me down more notches towards the basement, I am as low as I can go...
  22. D

    Is there any evidence that deconditioning alone causes pain and fatigue?

    Does anyone else find this in isolation an astonishing statement to put in such a manual. Since when was it appropriate to tell a patient that you can provide no supporting evidence for the treatment you are providing, it is up to them to find evidence against it, while simultaneously...
  23. D

    PACE Trial and PACE Trial Protocol

    Damn it, I'm hooked but I can't get it. Clearly as the range has reduced to 6 mins you have not just changed the time diff, but then it depends how you measured the times, only relative to midnight really makes sense but then original range 03:30-04:30 is 210 to 270 mins past midnight so factor...
  24. D

    Guardian article - suicide of ME sufferer

    I think it would have been nice to have a bit more of an explanation for *why* he didn't want therapy, but otherwise seemed quite balanced to me.
  25. D

    Comment by 'DaiWelsh' in 'A plea for broad leukemia virus research'

    I would be interested to know broadly what drives the current research priorities (I do not work in this field so could only speculate). I appreciate your point Don Quichotte about limited resources, but *if* the current research balance falls into "easy" patterns that can not be expected to...
  26. D

    Jason and Evans: To PEM or not to PEM? That is the question for case definition

    I think that depends for what purpose. I don't think many people would suggest discounting mild cases in clinical practice and/or refusing them treatment, however the single biggest issue we face is surely finding a treatment. When doing studies, tests, trials etc. if eliminating more mild...
  27. D

    Describe your PEM

    Good thread, thanks. As far as I remember it *was* pretty much the start of the illness, but that is with hindsight, I think it took me a while to realise the pattern, as it was so alien to have viral type symptoms (or mental symptoms) in response to over-exertion and particularly to get it...
  28. D

    Melanie Sykes on autism

    transcript, as best I can (bits were very waffly):
  29. D

    Jason and Evans: To PEM or not to PEM? That is the question for case definition

    I agree with this, I don't know what definition is being widely used, but it is clearly possible to misunderstand this. My "typical" (in so far as anything with this condition is ever predictable) profile after a period of significant exertion is: to feel "normally" tired straight afterwards...
  30. D

    Primary immune deficiency.......anyone?

    I asked my GP (UK) about CVIDS recently and I am getting the IGg blood test done next week, however when I suggested to my GP that this might get me out of the wilderness of no-treatment CFS he said in his experience people with CVIDS went to the immunologist who said "interesting diagnosis...