• 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.

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

Search results

  1. A

    Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in CFS

    It suggests the brain stem has reduced function, so other parts of the brain are trying to compensate by increasing myelin production. The brain stem has appeared in other papers (especially finding reduced blood flow) which night indicate that this is getting closer to the problem. Brain stem...
  2. A

    Video: "Mutations in Energy and Autoimmune Genes Cooperate to Cause ME/CFS" with Alan Light, PhD

    I'm pretty sure that in previous ages, people with ME just died because they couldn't look after themselves. There are lots of references to wasting diseases and the like.
  3. A

    Howard Bloom talks about recovering from MECFS

    B6 seems to help a lot of people, but I agree that a one-size-fits-all approach isn't ideal.
  4. A

    Loss of TRPM3 ion channel function in natural killer cells from CFS/ME patients

    Interestingly, the list you provide also includes a compound of inosine. Could that be why inosine supplements and inosine pranobex (Imunovir) work for some people? Niacinamide is also on there, and NADH is one of the only things to improve my morning stiffness and fatigue. Could all these...
  5. A

    Howard Bloom talks about recovering from MECFS

    I'm glad his pamphlet was posted here. It's interesting reading, and I had been meaning to ask him for it to clarify some of his statements. This bit seems key to me, though: It seems like pacing was the most essential part for him. His sleep pattern is a good suggestion for some people, too...
  6. A

    Howard Bloom talks about recovering from MECFS

    Yes. It's hard to know if anything is 'genuine' or not, but you can get it from your doctor if you're worried (that would be my first port of call). Pure oxytocin is easily available from suppliers because farmers use it for animals. I started on the sprays then just bought the stuff from...
  7. A

    Oxytocin injections anyone?

    I like oxytocin. It increases my blood flow and boosts my libido. I think it also relaxes my muscles, which reduces pain and helps me sleep.
  8. A

    Howard Bloom talks about recovering from MECFS

    Have you read the comments beneath the videos of him? There are many people questioning the things he says on this and other subjects. It's not an attack on him, just a statement of fact. There's a thread here which also talks about some of his larger-than-life claims, and this video in...
  9. A

    Howard Bloom talks about recovering from MECFS

    His claims should be taken with a pinch of salt. He's been called unreliable by many. That said, I'm on intranasal oxytocin spray, along with amitriptyline (both of which he mentions). Couldn't stand gabapentin, but these two drugs (and many others) have helped me. It's easy enough to get the...
  10. A

    Which brain imaging?

    SPECT may be useful. Look for reduced blood flow in the brain stem and changes to white and grey matter.
  11. A

    The lower TSH and the higher fT4, the more fatigue was reported by patients with FSS

    They make some big assumptions. Perhaps the so-called FSS patients really just have thyroid problems? Treat the thyroid and their FSPC may vanish!
  12. A

    Micro nutrient deficiency causes ME/CFS not germs

    So micro nutrients cure HIV and cancer too?
  13. A

    Micro nutrient deficiency causes ME/CFS not germs

    No office intended, but I don't think you understand how science works. Correlation does not equal causation, and it's a very basic mistake to make. Just because people end up deficient in nutrients does not necessarily follow that they have a poor diet. Deficiencies can be due to a number of...
  14. A

    Alcohol tolerance before ME/CFS

    Thank you!
  15. A

    Alcohol tolerance before ME/CFS

    As I said, though, it's not as easy as 'taking' the test. I would have to convince an NHS GP that there's significant need for the test despite the ultrasound, which clearly states that my liver and nearby organs are all healthy. It's unlikely to happen.
  16. A

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    @bohemian, do you have an advocate? Are you in the UK? By UK law, you should be offered a mental health advocate every time they section you. You can also get an advocate in advance of being sectioned, for example if you know that your doctor is discussing it with a specialist. Google your area...
  17. A

    Alcohol tolerance before ME/CFS

    Sorry, I did indeed mean conditions. I looked them up and I didn't seem to fit the profile. Also, ultrasound appears to be more accurate than some other methods for assessing the need for a liver biopsy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909550/ Fibrosis shows up as bright spots on...
  18. A

    Alcohol tolerance before ME/CFS

    Here's the thing, though: the normal range goes up to 40 or 56, depending on who you ask. I'm only over when you use that older, lower range. ALT would be expected to be over 100 in cases of cirrhosis or whatever. This website says 55 is high normal, but not out of range...
  19. A

    Alcohol tolerance before ME/CFS

    My ALT was raised while taking Imunovir. My normal ALT was 55, which is slightly raised, but not an issue. I've had a liver ultrasound, and everything looked fine, although interestingly, there was so much GI bloating that some of my organs weren't visible. That at least allows me to prove...
  20. A

    Alcohol tolerance before ME/CFS

    I used to drink like a fish! If I'm in a recovery phase, that ability briefly returns. But mostly, I can't even finish a single drink any more. Being able to drink is usually a good sign that I'm in a recovery phase, and that I can get away with a little bit more activity than usual without PEM.
  21. A

    Low thyroid?

    About six weeks ago, there was a Belgian study that showed a subset of ME patients had increased rt3 levels and normal t3 and t4 levels. This 'reverse t3' actually cancels out the t3, giving a functional hypothyroidism that is otherwise undetectable unless you test for rt3 (which few do). This...
  22. A

    Isoprinosine where to buy

    I get this brand from Eastern Europe: https://m.ebay.com/sch/i.html?_odkw=goprinosin&_from=R40&_trksid=m4084.l1313&_nkw=groprinosin
  23. A

    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    So this might be why the amitriptyline works too? I have this same benefit. I find ami works even better with an H1 and an H2 antihistamine before bed too (these also make your body metabolise it more slowly, so it could be that effect). It could be too much glutamate (which excites the...
  24. A

    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    Hyde and Ramsay found some patients had swollen livers that could be felt by palpation. I'm sure it's involved in ME in many cases, but agree it's probably not causative. It's too easy a thing to notice.
  25. A

    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Interestingly, some serotonin-inducing medications (buspirone in particular) have caused strong negative reactions in ME, as opposed to FM. It was being touted as a possible diagnostic test for a while. One of the theories at the time was that ME patients have too much serotonin, as opposed to...
  26. A

    Keele University seeks CFS patients for new study – lead researcher Carolyn Chew-Graham

    But would it be worth skeptics going and telling her that what's stigmatising is her approach and that what we want is an end to MUS and FND?
  27. A

    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    I would like to hear it too. Younger thinks there's a post-viral, an autoimmune and a purely metabolic subgroup each. Ron isn't denying that, but he's suggesting there's one underlying mechanism which unites them. This may be the mechanism for a hypometabolic state that's generalised over three...
  28. A

    Corticosteroids such as prednisone given during an acute viral infection may trigger ME/CFS

    I checked. Only 0.5mg per day. So it's likely safe at that dose. However, the side-effects are interesting: Common side effects of budesonide include: Nausea, vomiting, diarrhea, and constipation Dizziness and headache Upset stomach or stomach pain, gas, and bloating General or joint pain...
  29. A

    Corticosteroids such as prednisone given during an acute viral infection may trigger ME/CFS

    I've been taking corticosteroid inhalers since I was a kid. Would those count?
  30. A

    oxidative stress and inflammation in sleep dysfunction across disorders including CFS

    They refer at random to neuroimmune, neuropsychiatric and neurodegenerative disorders. That's a problem. The three words don't all mean the same thing.