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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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Search results

  1. Cheesus

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Condition A was likely caused by condition B. It is normal for one condition to cause another. CCI, for example, can be caused by Ehlers Danlos. Does that mean anyone with Ehlers Danlos who develops CCI does not really have CCI? Of course not. It is a consequence of their Ehlers Danlos, but it...
  2. Cheesus

    My mother's offering me a treatment I don't believe in.

    I'm with @Gingergrrl here. Seemingly benign treatments can have serious negative consequences for a whole variety of reasons, including the specifics of your individual condition and the manufacturing process of the treatment (assuming it is some chemical compound that you take orally or...
  3. Cheesus

    Vipassana Gave Me Insomnia - Why?

    Sorry, I cannot tell you what the cause or cure for your insomnia is. However, I have been practicing Vipassana for many years, so I can speak with a bit of experience about it as it relates to ME/CFS. First, you have really thrown yourself in at the deep end. In fact what you have done is jump...
  4. Cheesus

    I have this hope for making a healing center for ME/CFS

    I wouldn't want to call it a healing centre, as I think that could give people the false impression that you can heal them. Perhaps call it an ME/CFS Retreat instead? You could maybe bundle in other conditions like MS too.
  5. Cheesus

    Anyone in the EU want a free keto testing kit?

    Someone has now claimed the kit.
  6. Cheesus

    Anyone in the EU want a free keto testing kit?

    I tried the keto diet but it was not for me. I now have a blood testing device that cost me about £60 that I do not have any use for. I also have lancets and testing strips. I am happy to post it anywhere in the UK for free. Please send me a private message if you are interested. I will...
  7. Cheesus

    candida lab test

    I spent years chasing the candida dragon. It was a serious detriment to both my health and my wallet. The last time I checked (which was admittedly a few years ago), there was no good evidence that immunocompetent patients are susceptible to gastrointestinal overgrowth of candida or that such...
  8. Cheesus

    is swimming(aerobic exercise) recommended for us?

    You should do what exercise you feel able to. If swimming makes you feels good, do it.
  9. Cheesus

    Keto debunked.

    How long did it take for you to begin seeing changes?
  10. Cheesus

    Started 4ME / nexavir

    @Sushi Are you still take it now? Do you have an opinion on the transdermal cream?
  11. Cheesus

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    New study: Why do some ME/CFS patients benefit from treatment with sodium dichloroacetate, but others do not? Abstract Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) is an enigmatic disease the pathogenesis of which remains elusive. Pragmatic proof-of-principle of the hypothetical...
  12. Cheesus

    Testing ourselves to find an answer

    @Mel9 I searched for virus, bacteria and fungi in blood, urine, stool and on a nasopharyngeal swab.
  13. Cheesus

    Testing ourselves to find an answer

    @kangaSue It's a good company, but I personally didn't think it produced particularly useful data. I got confirmation that I have lots of different bacteria in and around my body, but it is impossible to know if any of those bacteria are linked to my condition. I suppose it ruled out Lyme, but...
  14. Cheesus

    Michael Sharpe is at it again

    We want a treatment that is effective. I'm amazed he even had to ask. This is really simple stuff. What was he expecting the answer to be?
  15. Cheesus

    Now very severe HELP

    @Countrygirl I will make an update if substantive change materialises. Everything now is a bit tentative and might disappear.
  16. Cheesus

    Now very severe HELP

    I feel so awful to hear that Marin hasn't improved. I know precisely how he feels right now. Makes me want to weep. He's not alone though... at least he is not alone. I fluctuated around the state he is currently in for 18 months before i started on LDN. That was Summer 2016. It really helped...
  17. Cheesus

    Oregano oil die off?

    Sorry, I wish I could have had better news for you!
  18. Cheesus

    The parents of Merryn, who died of ME in 2017, speak out

    I can't stand it when doctors say they don't "believe" in ME. I couldn't give two shits what they believe. Beliefs are what you have when you don't have evidence. It isn't a religion. If they took the time to just look at the evidence then they would know their beliefs are nonsense.
  19. Cheesus

    Oregano oil die off?

    Oregano oil "die off" is what pushed me over the edge from being chronically unwell into ME proper. Beware of assuming you just have to push through.
  20. Cheesus

    NIH still needs patients

    That sounds great. I hope people who can handle it take you up. Have you posted this on s4me.info and Reddit?
  21. Cheesus

    Incredible improvements with Helminthic Therapy

    No improvement. In fact I would say I have deteriorated over the last 6 months. Pretty sure I am going to terminate.
  22. Cheesus

    Feel like ME/CFS has made me age faster

    Why do you think it was poorly designed?
  23. Cheesus

    Now very severe HELP

    This is one of the worst things. Eventually I had to cave in and get a commode.
  24. Cheesus

    STRESS INTOLERANCE

    Yes, absolutely. In fact I would go so far as to say that this symptom and PEM are the two defining characteristics of ME/CFS. Sympathetic nervous system hyper-sensitivity is just awful. It causes all sorts of secondary symptoms like noise and light sensitivity. Any stressor, whether physical or...
  25. Cheesus

    Now very severe HELP

    Hi Martin, I know what this situation is like. I have been there. It is honestly awful. I would not wish it on my worst enemy. I really wish I had some sage advice that would help you stage a rapid return to your previous level of activity. I am optimistic that you will return to that level -...
  26. Cheesus

    Pineapple Fund donates $50k to ME Action

    We are incredibly fortunate to have been been the recipients of such enormous generosity. You can see the ME Action logo at the bottom of their webpage. The donation was made earlier today. https://pineapplefund.org/
  27. Cheesus

    Transcript of the parliamentary debate on the PACE trial 20th February 2018

    Summarises the problem with subjective outcomes perfectly.
  28. Cheesus

    Value of Circulating Cytokine Profiling During Submaximal Exercise Testing in MECFS

    Honestly, I'd rather not have vascular problems, particularly if those problems would directly involve the heart.
  29. Cheesus

    Can Rituximab work in patients with no known autoimmunity?

    The problem here is that Rituximab does not work in patients with CFS/ME. I know there are some anecdotes to suggest it does, but the evidence from a large well designed trial suggests otherwise. Using anecdotes to inform treatment when there is good evidence to contradict those anecdotes is...