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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. Deepwater

    CALL TO ACTION! NICE ARE BETRAYING US!

    Firstly sorry everybody if I keep disappearing. I am up and down lately, I'm afraid, and have other things pressing when I am able for anything. Yes, I too wrote to NICE about the make up of the committee and got the standard reply from their Communications Manager last week, to which I finally...
  2. Deepwater

    Ben Goldacre: checking if clinical trials reported what they said they would

    Read all the articles over the years. The Guardian keeps repeating uncritically the claim that ME patient activists are hounding scientists, sending death threats, etc, whilst the good ME patients follow the scientists’ advice, do GET and recover. It repeatedly portrays any criticism of...
  3. Deepwater

    Ben Goldacre: checking if clinical trials reported what they said they would

    In case this has been missed, Ben Goldacre is a psychiatrist and friend of Simon Wessely. Wessely was his first boss. Goldacre used to be the Guardian’s science man as well. The Guardian’s long-standing hate campaign against ME sufferers seems to be driven entirely by cronyism so far as I can...
  4. Deepwater

    Professor Peter White at it again...........new paper on GET and ME

    Thanks, Lisa. When I first read the purpose section of this abstract I thought White might have distinguished ME and CFS sufferers as two separate patient groups, given Michael Sharpe's recent admission with respect to PACE. But no. The NICE criteria lump CFS and ME together as one illness, and...
  5. Deepwater

    Mysterious, extreme constipation - need this board's help!

    You say you cannot digest wheat and avoid bread where possible, but have you tried going totally gluten free? I have similar issue with digesting wheat and was very constipated before giving it up. Undigested gluten is - well - glue. It may not be the whole answer if your bowels are very...
  6. Deepwater

    Professor Peter White at it again...........new paper on GET and ME

    Has anyone seen the full text? How were patients with CFS and ME respectively diagnosed? We’re there any differences in results between those who met criteria for ME compared to those who did not? - or didn’t PW maybe bother to look?
  7. Deepwater

    Parkinson's linked to appendix.. what about CFS?

    I had my appendix removed aged 18, four years before contracting glandular fever, which was what started my problems.
  8. Deepwater

    CALL TO ACTION! NICE ARE BETRAYING US!

    I could try, but my MP is part of the problem rather than part of the solution.
  9. Deepwater

    CALL TO ACTION! NICE ARE BETRAYING US!

    Just noticed this thread does not seem to be showing up in the lists right now. Is this just a blip? Hopefully? It’s a pretty urgent topic.
  10. Deepwater

    CALL TO ACTION! NICE ARE BETRAYING US!

    I’m prepared to help in any way I can- although that won’t be much. I feared this from the outset. These people are shameless, ruthless and wholly in control. I really wish I believed in Hell, because getting them to even stop their abuse in this world, let alone pay for it, would be a...
  11. Deepwater

    Pain and weakness in arms, shortness of breath, nausea?

    Thanks a lot for this. To be honest, I can’t say the symptoms described are really clicking, but I am getting a first routine heart screening for oldies in November, so I can let you know what they do and how I get on.
  12. Deepwater

    Brain on Fire: Widespread Neuroinflammation Found in ME/CFS by Jarred Younger

    Now I never knew that. Paracetamol has never worked on me. It didn’t work for my mother either. It didn’t work on my daughter when she was small, though she says it does now.
  13. Deepwater

    Pain and weakness in arms, shortness of breath, nausea?

    My cholesterol levels went up as soon as I became ill, and have been too high ever since, but nothing has been done about it. UK GPs don't tend to bother one's fluffy unmedical head with details of the blood tests they order, but they did run some check on my liver, both when I first became...
  14. Deepwater

    Pain and weakness in arms, shortness of breath, nausea?

    Thanks for the responses, everybody. It definitely isn't thiamine deficiency as I've been supplementing with it for over a year now. In fact, I take a lot of different B vitamins. I did have an ambulatory ECG once because of feelings of heart doing odd things from time to time (bit like a...
  15. Deepwater

    Pain and weakness in arms, shortness of breath, nausea?

    I sometimes wonder as well, but how do I get my GP to take me seriously? I also have a lot of fluid retention and can't breathe if I bend over, which they are now saying is a sign of heart disease.
  16. Deepwater

    Science Deniers (CFS and CBT/GET?)

    My point entirely
  17. Deepwater

    Science Deniers (CFS and CBT/GET?)

    Literature professors don’t deal with evidence on a professional basis; they search for deep meanings in fiction.
  18. Deepwater

    RH NEGATIVE

    I am.
  19. Deepwater

    BMJ Opinion - "Missing the psychosocial diagnosis—a form of institutionalised malpractice" !!!

    I just googled one of the authors for fun, Bruce Arroll, and he's into a psych treatment for this that and yon called ACT (or FACT if it's focused) in which - so far as I can make out because it's not lucidly explained, patients are persuaded to surrender their souls...
  20. Deepwater

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    I believe the McLaren test which Dr. Myhill uses involves testing in serum, and also fresh (never been frozen), and both of those things are reckoned to be critical to getting a good result, but don't quote me. However, I feel duty bound to warn that if the test is being ordered to convince...
  21. Deepwater

    Prof Michael Sharpe of the PACE trial admits on twitter that ME & CFS should have been kept separate

    I hate it too, although it might be good news for us, because ut’s Just a damage limitation ploy to keep hold of as many of their victims - sorry, patients - as they can, which is a gross misuse of public money and continues to encourage idle diagnosis of people who may have serious conditions...
  22. Deepwater

    Prof Michael Sharpe of the PACE trial admits on twitter that ME & CFS should have been kept separate

    The two things have been treated as the same since Oxford criteria CFS was accepted as a thing by the U.K. authorities. They changed the name and the diagnostic criteria simultaneously, and ME got subsumed into this new larger diagnosis. As Prof Hooper phrased it, ‘How to make a disease...
  23. Deepwater

    In Expectation of Recovery: Why the UK government buried ME

    Hi @Learner1, I wasn’t suggesting that we should allow ourselves to be bullied into accepting psychiatric diagnosis or treatment - I never have, and neither did any of those poor people dragged from their sickbeds by the men in white coats and into enforced psychiatric care. Whilst I commend...
  24. Deepwater

    In Expectation of Recovery: Why the UK government buried ME

    Just illustrates the point that politicians are concerned purely with saving money, and most of them will never take the trouble to investigate the facts. If we are to overturn this policy of psychiatrising physical illnesses, especially our own, we have to speak to politicians in a language...
  25. Deepwater

    UK rebranding of ME as PPS/MUS to be treated with GET/CBT

    Will do that. I've been in too much of a brain-mushed crash for the last couple of weeks, but have been a bit better today so hopefully will be able to come up with something over the weekend. But I do agree with @Inester7 - we have to fight them on their own terms. We need our own...
  26. Deepwater

    UK rebranding of ME as PPS/MUS to be treated with GET/CBT

    OMG. . . . :nervous: I see the twit who wrote it has a twitter account. Has anyone tried to engage with him about this? P.S. I don't have a twitter account - twitter believes I am a robot and won't let me have one.
  27. Deepwater

    Did you have a vaccination not long before developing ME/CFS?

    That really is scary. I've downloaded the papers, which I have to admit go rather over my head. But again, how would I be able to take this forward?
  28. Deepwater

    Did you have a vaccination not long before developing ME/CFS?

    I hadn't even heard of macrophagic myofasciitis until a couple of years ago but I've definitely thought about it since, particularly as the symptoms described match my own to a tee. But I live in the UK, and how on earth would I get a diagnosis? MMF doesn't even seem to be acknowledged in the...
  29. Deepwater

    Did you have a vaccination not long before developing ME/CFS?

    Hepatitis jab for me. Problems started less than 24 hours later. Now into 24th year. . . .