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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. Art Vandelay

    TMW You get banned from a me/cfs subreddit for speaking on misdiagnosis and "recovery/cure" stories

    I haven't had a chance to read the other posts on this thread, but I thought I'd let you know that the subreddit r/cfsme as well as r/mecfs are run by a guy who claims he cured his CFS with positive thinking and exercise. He (of course) wrote and sells a book about it. He also promotes the...
  2. Art Vandelay

    Is there a link between prior trauma, type A personalities and Long Covid?

    ME/CFS patient, Michiel Tack, has been covering these issues on his blog recently. Basically it's all psuedoscientic nonsense: ME/CFS SKeptic: A new blog series on the dark history of psychosomatic medicine
  3. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    Interesting. My specialist didn't remark on my brain MRI results so I assumed they didn't find anything. I'll make a note to ask her when I talk to her next.
  4. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    That also sounds familiar. Lots of long covid patients are also mentioning odd chest pains, tight bands around the chest and rib pain. I finally got a chance to talk to my specialist about it and she quickly sent me off for an MRI of my spine last week.
  5. Art Vandelay

    Marshall Protocol

    I decided to try it after Amy claimed that it cured her within a year or so (looks like her articles on prohealth about it are no longer there). However she later said that it only got her back to 90% or so and she was only able to work part-time with a lot of accommodations. I'm very sceptical...
  6. Art Vandelay

    Marshall Protocol

    Yes, I had vitamin D disregulation: Low 25 D and very high 1,25 D. After some years on the protocol, my 1,25 D did come down to the top of the normal range.
  7. Art Vandelay

    Marshall Protocol

    You really need to ask a MP-aware doctor or on the MP site these questions. (Note: that the MP recommended dosages are a very high dosage of Olmesartan.) I have heard of some people with ME/CFS seeing side-effects on the standard blood pressure dose (ie, 40mg). One person tried taking only 10mg...
  8. Art Vandelay

    I think insomnia is largely related to gut - solution tips?

    My crippling insomnia also seems to be linked to my gut (also my PEM too). The only real relief from insomnia that I've had in 20 or so years with this illness has been with taking digestive enzymes over the last few years. The ones I take don't have anything fancy added. They're just...
  9. Art Vandelay

    Burning chest pain -anyone else?

    I think I just responded to you on another forum. This is a poll I set up here asking about weird chest symptoms: https://forums.phoenixrising.me/threads/poll-do-you-get-symptoms-similar-to-an-ms-hug.84472/ It's definitely worth seeing a doctor to make sure you're not suffering from anything...
  10. Art Vandelay

    Days without symptoms?

    In the first few years of my illness (mine started with EBV), this was a common pattern for me. I'd start to feel better and would think that I'd finally turned the corner only to worsen a few days (or even a week) later. My doctors at the time told me to push myself and ignore my symptoms so...
  11. Art Vandelay

    Graham McPhee (@Graham)

    Such a loss. Some of Graham's contributions are noted here:
  12. Art Vandelay

    Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome

    Acceptance and Commitment Therapy (ACT) appears to be the back-up plan for many of the UK-based BPS quacks if the new NICE guidelines finally outlaw GET and CBT. I imagine Crawley etc will simply change the name of their existing treatments to 'ACT' and continue on as they have before.
  13. Art Vandelay

    Marshall Protocol

    I have been meaning to write a summary of my thoughts on the MP for some time. I hope nobody minds if I post them on this thread rather than creating a new one. Hopefully this won't be too disjointed. I was on the MP for about 10 years. Clearly I wouldn't have remained on it for so long if I...
  14. Art Vandelay

    Marshall Protocol

    I tried the MP for many years but had to stop due to unbearable side-effects which were probably caused by a reactivation of EBV. I would be very reluctant to go on the MP without having a doctor who is knowledgeable about ME/CFS and with a lot of experience with the MP. (I will try to add my...
  15. Art Vandelay

    Poll: Do you have Myalgic Encephalomyelitis (ICC)

    Spot on. I am not fatigued or tired. In fact, I have been saying for over 20 years that I feel sick, not tired. The specialist who first diagnosed me asked me to list my ten worst symptoms. After I had finished, he said "I noticed that you didn't say 'fatigue'". I responded that I felt...
  16. Art Vandelay

    Australian ME/CFS Good Doctor List

    Yes, the local ME/CFS society's list of doctors is almost as out-of-date as the one in this thread unfortunately.
  17. Art Vandelay

    views on Medically Unexplained Diseases Royal College

    Turner-Stokes is also responsible for the GAS-light model. I kid you not. How tone-deaf and clueless can one person be?
  18. Art Vandelay

    Australian ME/CFS Good Doctor List

    Dr Oldmeadow in Melbourne only prescribes stimulants and GET. Last I heard, he's not taking new patients anyway given that he's restricted from prescribing stimulants and near retirement. Dr Schloeffel in Sydney I believe is no longer seeing ME/CFS patients after being hounded by authorities...
  19. Art Vandelay

    Australian ME/CFS Good Doctor List

    No, all the doctors on the SA list have retired, passed away or moved I'm afraid. I'm also struggling to find a good GP in Adelaide. There is a small SA ME/CFS group on Facebook if you use that but I can't say I've received many good doctor suggestions there either...
  20. Art Vandelay

    Where can I buy high-quality melatonin online? I am in the UK.

    Try https://iherb.com I've been ordering melatonin from them for ages with no problems.
  21. Art Vandelay

    NICE are NOT going to publish the new guidelines tomorrow

    For those of you in the UK, please email your Member of Parliament about this if you can. NICE have shown that they bow to political pressure, so it's time for us to stand up to the BPS cabal. Petition here: Don't let vested interests perpetuate harmful treatments for ME/CFS!
  22. Art Vandelay

    The TImes, Sean O'Neill: Disputed therapies for myalgic encephalomyelitis abandoned

    There's a longer version of the article online. Prof. Edwards' quotes are reported in full and are scathing of GET and CBT clinical trials:
  23. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    Given the definition of MS Hug above (which mentions that it can occur anywhere between the neck and waist), I should have used 'torso' instead of 'chest' in my question to be more accurate perhaps. Sorry about any misunderstandings!
  24. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    Another factor that caused me to post this thread is that I'm seeing lots of Covid long-haulers posting about these exact symptoms. Like many of us, they have been fobbed off by their doctors with various 'non-explanations' such as 'anxiety'. Some are being told that it's Costochondritis also...
  25. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    That's extremely interesting! The sensations I've experienced have rarely been as severely painful as appears to be the case in Bornholm disease but it does sound similar too.
  26. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    I have spoken to many ME/CFS patients who seem to have symptoms which mimic an "MS Hug". This appears to be one definition: My interest in this has been sparked by my own odd symptoms which seem to resemble an MS Hug. I also recalled this thread from @Sasha who described it as "feeling like...
  27. Art Vandelay

    Study found 31% of EBV ME/CFS patients achieved full remission on spironolactone 25 mg daily

    This is an extremely poor quality study (if it can be called that as I believe it was just a poster for a conference). There's no control group, no blinding, subjective outcome criteria and it doesn't even specify what diagnostic criteria were used. It also doesn't specify how 'remission' was...
  28. Art Vandelay

    POLL: Has anyone recovered with the Gupta Program?

    There's no evidence that these 'brain retraining' programs work for ME/CFS. Most of them are scams. Advertising regulators in the UK ruled that Gupta made claims that his program could treat ME/CFS that are unsupported by evidence after the ME Association made a complaint about it...