• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Mithriel

    Substrate utilisation of cultured skeletal muscle cells in patients with CFS

    I felt fantastic on metformin. It did not last, but I had a few months where I was able to go out more and do more without payback. Beta blockers on the other hand had me pinned to the bed unable to move yet some people with ME feel they help. I think a lot comes down to an interaction between...
  2. Mithriel

    Anyone heard of functional neurological disorder?

    "Functional" disorders have always been part of neurology. They were the basis of Freudian psychoanalysis, too complicated to get into just now but neurology has always been too close to the psychiatrists. It is not specific to ME though more and more people with Me are being rediagnosed with...
  3. Mithriel

    #OMFScienceWednesdays-ME/CFS CFSRC & SGTC team member: Mohsen Nemat-Gorgani, PhD

    I can't remember the name of the researcher in NZ who found that blood cells in ME patients were deformed and couldn't get into small blood vessels. His research was "disproved" by other groups who could not replicate his findings. He told them over and over that he looked at fresh blood...
  4. Mithriel

    Dr David Tuller: Do All Clinical Trial Experts Love PACE?

    Michael Sharpe developed the Oxford definition of CFS and has been there right from the beginning of the fiasco in the UK. His entire career and reputation is built on the BPS view and treatment. He is not wrong, it is the patients' not choosing to follow his beautiful guidelines that keeps us ill.
  5. Mithriel

    New paper by Dr Geraghty:ME &BPS :a review of patient harm & distress in the medical encounter

    It really does not say that. Keith Geraghty is a staunch supporter of ME patients and a thorn in the side of the BPSers. He wants the patients to be believed and treated as experts in their own condition. The doctors are not encouraged to lie but to actually change how they look at and consider...
  6. Mithriel

    New paper by Dr Geraghty:ME &BPS :a review of patient harm & distress in the medical encounter

    He means by listening to patients and believing them. Patients know what is helping them and what is doing them harm. He is a complete supporter of biomedical treatment and research for ME.
  7. Mithriel

    Diabetes drug could be the first to reverse the disease

    I suspect that diabetes in ME is different and related to the disease. I can't keep to a particular diet, I am just too ill. Instead I have always ate the recommended healthy diet, as unprocessed as possible, limited empty calories. I used to get hypoglycaemia if I did not eat enough...
  8. Mithriel

    Michael Sharpe is at it again

    When did patients have to find a treatment for their disease? That is the job of doctors and researchers. Even if the PACE trial's results were accurate and not fraudulent only 20% recovered (even if that was a true recovery as everyone else except PACE doctors understand the term). So why is...
  9. Mithriel

    MPs demand more biomedical research for cruel 'death sentence' disease MEA

    The disease causes a "living death" with far too many people chosing a real death as preferable to the twilight existence they have. People are bedridden for forty years or more unable to tolerate light, sound or touch. And let us not forget the many people who actually die. Just because...
  10. Mithriel

    Do people recover?

    Before CFS, ME was a totally different illness from post viral syndrome which was fatigue and ill health which could last for a few years but usually resolved in about a year. This became conflated with CFS and I think it accounts for a lot of the recovery. Glandular fever can also have a long...
  11. Mithriel

    ME, NLP and LP by Nancy Blake Feb 2018 PostiveHealthOnline

    These basic beliefs are very profound. They are a complete answer to the biopsychosocial people. We are continually drawn into convoluted arguments about mind body dichotomy and every disease having a psychological component. We exhaust ourselves getting tied up in the statements they throw into...
  12. Mithriel

    Links between CFS & Aspergers?

    My uncle, born 1926 went to a "special school" because of stomach problems that were probably coeliac disease. I never heard the details, but he was an adult of normal intelligence and behaviour, so those children were not necessarily severely affected.
  13. Mithriel

    Important new research from Professor Chris Exley linking aluminium in vaccines with autism

    People with autism wish that the money that has been spent trying to show that vaccines cause/ don't cause autism had been spent researching their actual disease. many of them think about is the same way we do about CBT and GET
  14. Mithriel

    Links between CFS & Aspergers?

    When my grandson was diagnosed with autism and we read up about it, it explained the ways in which my lovely mother in law was "strange". The very affected kids with autism would have been in special schooling or locked away in institutions, but life was much more ordered in those days (the...
  15. Mithriel

    Video Dr. Byron Hyde - Enterovirus theory?

    As best as I can remember, Melvin Ramsay, was asked if a researcher could look at the patient files and he agreed. A colleague told him he would regret it and he did, bitterly. He spent the rest of his life trying to make up for it to his patients. McEvedy and Beard had published two accounts of...
  16. Mithriel

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    Maybe she was putting her top on and got exhausted half way through? And not able to put on a bra at all because that really takes an effort.
  17. Mithriel

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    "The first failed polio immunization: Medical publication interest however centred around the staff of the Los Angeles County General Hospital when 192 physicians and hospital health care workers fell ill following an immunization of what was thought to have been an injection of sterile immune...
  18. Mithriel

    ME/CFS energy metabolism study by Cara Tomas confirms impairment in mito oxidative phosphorylation

    The theory behind HBOT is that the amount of dissolved O2 in the interstitial fluid becomes higher so it can get into tissues where the blood vessels are damaged and there is no haemoglobin. It is almost miraculous for wounds and broken bones. I have been going for years and it has helped me...
  19. Mithriel

    Reason why women come down with CFIDS more than men?

    It may be a myth. The well known epidemics were often in hospitals where the nurses were women so the figures were skewed; also the Royal Free was a centre that encouraged women doctors. They were also emphasised to encourage the "women are liable to mass hysteria" idea. It was accepted that...
  20. Mithriel

    ME/CFS stopped with outbreak of autoimmune disease

    Lots of autoimmune diseases improve during pregnancy, but no on has come up with a treatment that mimics it.
  21. Mithriel

    Well here's a treat: Two videos of Ms Crawley, leading ME researcher, (!) delivering her TEDx talk

    One of my earliest memories and one I know was mine, not from a photo or story, is of falling into the sea. I was no more than three, probably younger, but the bank I was sitting on must have crumbled. I remember movement and then looking up at this gorgeous, beautiful colour, everything...
  22. Mithriel

    Well here's a treat: Two videos of Ms Crawley, leading ME researcher, (!) delivering her TEDx talk

    In her book "The Sociopath Next Door" Martha Stout says that a psychopath she interviewed said that he liked to evoke pity in normal people as their judgement went right out the window once they felt that.
  23. Mithriel

    Fibromyalgia and CFS: The Underlying Biology & Related Theoretical Issues (King's/IoP)

    I realise I am too cynical, but I worry that all this abnormal biology is seen as a consequence of our disease being perpetuated because our "sickness response" is kept switched on. And it is kept switched on because of our behaviour. So, of course, we need intensive CBT and GET to fix it...
  24. Mithriel

    The presence of co-morbid mental health problems in a cohort of adolescents with CFS

    Trudie Chalder is one of the original biopsychosocial people, an exnurse who got her foothold working with SW. They might have changed their ways, but they used standardised questionnaires to diagnose depression. These questions often include things like "are you fatigued?" or "has your sleep...
  25. Mithriel

    Do you struggle with post-exertional malaise? How do you deal with it?

    Now I have thought about it, the biggest help I have had with PEM is aids to stop me using too much energy. From big things like a stairlift, to little things like a cup with 2 handles or a stool in the kitchen they can make a difference. You can ask to be assessed by an occupational therapist...
  26. Mithriel

    Cfs outbreaks explanation

    Really, there is no getting away from the fact that there were many epidemics and they were caused by infections just like all the other epidemics at the time. They happened to different types of people across different continents, often in communities where people mixed closely, shared a core...
  27. Mithriel

    Multiple Sclerosis

    I know a lot of people with MS and their main symptoms are nerves just not working. They talk about holding a cup then it just dropping or standing up and their legs giving way. They have a cotton wool feeling in their muscles. Gut problems do happen but their first attacks are usually more like...
  28. Mithriel

    Do you struggle with post-exertional malaise? How do you deal with it?

    Heart rate monitoring is recommended by Mark Van Ness and the CPET testing people. There is a lot of information out there. When they tested people using this they found that our aerobic system is broken (some more than others) so we go it anaerobic respiration for the activities of daily life...
  29. Mithriel

    Top 3 Investigatory CFS/ME specialists in the UK?

    We are all different, but my hypoglycaemia always happened when I was "exercising". I always had the same breakfast but whether I made it till lunchtime depended on what I was doing, so for me it was a simple equation of too much exercise and not enough glucose. It was very frustrating because...