• Welcome to Phoenix Rising!

    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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Search results

  1. Revel

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    Thanks, @Countrygirl. For those of us who are house/bedbound, I have found online card websites (Moonpig, Funky Pigeon, etc) extremely useful. You can add a short message to the chosen card and they will send it direct to the recipient. Perhaps they may also be a useful option for our...
  2. Revel

    WE ARE NOT ALONE: POTS hits COVID patients, who get same response we do: dismissal, anti-d’s, anxiety drugs, and “…ALL IN YOUR HEAD…”

    To illustrate the subject matter of this thread, on Twitter yesterday was a dysautonomia clinic doctor whose patient had been diagnosed with "anxiety" and prescribed Xanax by a cardiologist seen elsewhere, who was seemingly unaware of the symptoms of POTS:
  3. Revel

    Dr David Tuller: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

    Alice's hospital address was given on Twitter yesterday for people to send cards and support. I can add it here, if it's deemed appropriate to do so?
  4. Revel

    Gastric dysmotility and gastrointestinal symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (Steinsvik et al, 2023)

    @Murph, it was some kind of meat soup.
  5. Revel

    Visible symptom tracker app

    There is an excellent podcast called "The Rest Room" hosted by Natasha Lipman (a chronic illness blogger). In this episode (link below), "Can technology teach me to pace?", she interviews the founder of the Visible Team, Harry Leeming (who has LC). He describes his journey with LC, how he...
  6. Revel

    Visible symptom tracker app

    The app name, "Visible", is a little misleading since all of the symptoms actually being tracked are . . . not. 😄 The end goal for the Visible Team is to create a wearable activity tracker for pwME/LC to aid pacing vs. activity trackers like Fitbit that do not accommodate our needs. I...
  7. Revel

    Visible symptom tracker app

    The app is free, @Rufous McKinney. I've no idea how it all works yet or whether I will find it useful. It's still in the developmental stage at present and any input we give now will hopefully assist in honing the final product.
  8. Revel

    Visible symptom tracker app

    I downloaded the app earlier today, @Mary, and have just entered my evening's data. I am hoping that participation will help further research and development of such tools for people with ME and Long Covid.
  9. Revel

    Visible symptom tracker app

    Visible symptom tracker app now available for download: https://www.makevisible.com/blog/the-next-step
  10. Revel

    Has anyone tried to train dogs to detect me/cfs?

    Medical service dogs for POTS have been around for a good few years now, both in the US and the UK: https://www.servicedogtrainingschool.org/blog/pots-service-dog My dogs also become very protective of me during a POTS flare, @IThinkImTurningJapanese. However, they have yet to actually detect...
  11. Revel

    DecodeME: Take Part in the World's Largest Genetic Study into ME

    Yes, I agree and I am sorry that you are likely to be excluded from the DeCode ME research project as a result. I have had ME since childhood but didn't receive an "official" diagnosis until I was 48! My GP flat refused to entertain the possibility that I had ME until my POTS consultant...
  12. Revel

    Dr David Tuller: Professor Crawley Promotes Acceptance and Commitment Therapy for CBT Failures

    "ACT"? Oh joy, another Crawley-related acronym to join SMILE, MAGENTA, CLoCK, PEACH, MUPP(ET)S . . .
  13. Revel

    Medical Sexism In Healthcare Is Real … Women Are Sharing Times They Were Misdiagnosed Because Their Doctors Didn't Take Them Seriously

    This woman wasn't even told she'd had a stroke. She only found out after requesting her notes, but by then it was too late to treat (unless antidepressants and a manicure are how strokes are dealt with on the NHS, I dunno . . . )...
  14. Revel

    Jennifer Brea is missing ***Update: Found Safe!***

  15. Revel

    "Living with ME/CFS: The debilitating, invisible illness stealing women's energy" - Lauren Clark

    I cannot disagree with you @Jyoti, and I did hesitate about posting this link for the exact reasons you have brought up. Those of us with a lengthy experience of this illness are only too aware that symptoms can fluctuate massively over time. We can potentially go from severe to mild and back...
  16. Revel

    "Living with ME/CFS: The debilitating, invisible illness stealing women's energy" - Lauren Clark

    @Jyoti, I read it that her mother has improved considerably, compared to her worst years, but still has ME. Her daughter mentions that she has "occasional crashes", which makes me think her "energy envelope" has expanded but that she still needs to manage the condition.
  17. Revel

    Post-Exertional Symptom Exacerbation (PESE)

    . . . and whatever happened with "Systemic Exertion Intolerance Disease" (IOM, 2015)? So many names, such little progress . . .
  18. Revel

    "Living with ME/CFS: The debilitating, invisible illness stealing women's energy" - Lauren Clark

    I recently came across this article, published in Women's Health magazine last year, that I haven't seen posted on the Forum (apologies if I missed it). It is a daughter's account of her mother's ME, how it impacted the family and giving a brief history of the illness for the uninitiated. I...
  19. Revel

    New Scientist: We are finally starting to understand brain fog and how to treat it

    If you subscribe, the first 4 weeks are free, cancel at any time. We should take it in turns to sign up when an article may be of interest. :whistle:
  20. Revel

    New Scientist: We are finally starting to understand brain fog and how to treat it

    I used to read it for free at the library, less conspicuous. ;)
  21. Revel

    New Scientist: We are finally starting to understand brain fog and how to treat it

    @Hip, my feeling from reading those first 3 paragraphs was that the article is a bit of a "fluff" piece, plugging a book published in 2021, and letting us know there is hope on the horizon, thanks to the emerging field of long Covid research, but without going into too much useful detail. It...
  22. Revel

    ME/CFS patient poster

    Hi, @mecfs352352. My thoughts on the proposed pamphlet, for what they're worth: 1. Amend the graphics I agree with the members above that the graphics are a poor representation of an ME patient. There seems to be some confusion as to what is meant by “flu-like” symptoms. Patients with ME...
  23. Revel

    The Times: Sean O'Neill: My daughter couldn’t be saved but there’s hope for other ME patients

    Not surprised, similar happened to me. Admitted to hospital severely malnourished and weak. In the absence of any bloodwork abnormalities/visible physical symptoms, the doctors were of the opinion that I was deliberately starving myself. Parents were told I wouldn't last the week and that my...
  24. Revel

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    Ouch! ME/CFS has robbed me of many things, but "motivation" to be well again certainly isn't one of them! This reminds me of when my POTS consultant wanted to refer me for GET at the local "fatigue clinic". I expressed my reservations based on the known harm GET can cause pwME. He replied...
  25. Revel

    Please donate to Dr David Tuller's Fundraiser so he can continue his advocacy work for us

    David Tuller is not advocating for the use of exercise as a treatment for ME/LC, far from it. He campaigns on our behalf against its use, based upon the fact that it has been proven to be both ineffective and potentially harmful to patients. I think that's plenty worthy of funding his...
  26. Revel

    Dietary changes - what's your experience ?

    In case anyone is interested in the Biomesight stool test that @bertiedog recommended above, there is currently a £10 off sale on their website, plus a further £20 off using the voucher code "MAR" at checkout, and free UK delivery - although it doesn't beat @bertiedog's '2 for 1' Christmas deal...
  27. Revel

    Are you nervous about mentioning you have ME when you need treatment for something else?

    If your comment is in response to my post, @lenora, this is exactly what I was doing each time I was repositioned against my wishes. The nurse then removed the controls altogether, so that I could no longer do this, which left me sitting at an angle that causes me to faint. My point was that the...
  28. Revel

    Are you nervous about mentioning you have ME when you need treatment for something else?

    This might fly in the US but this advice only serves to highlight the issues we have in the UK. Most NHS staff look blank when we mention "dysautonomia", as if we have made the word up. They also have rarely heard of POTS and, if they have, seem to consider it an anxiety-related disorder...
  29. Revel

    Are you nervous about mentioning you have ME when you need treatment for something else?

    100%, @Da Funk, and I had a very similar experience to yours, almost 4 years ago, after been sent to A&E by my GP with abdominal pain. Having already had several bad hospital experiences over the years, I had decided not to divulge my ME/POTS diagnosis. However, on admission to the ward, the...
  30. Revel

    Dr David Tuller: The Lancet Publishes Whine de Coeur from Impassioned GET/CBT Defenders

    Did my eyes deceive me or were 29 references included at the end of this priceless Lancet piece? Is it usual to cite that many for a mere "Comment"? Would have thought the references alone exceeded the normal wordage allowed for a "Comment", truly plumbing the depths of ignorance to back up...