• 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.

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Search results

  1. C

    Vancouver: Women with ME/CFS sought for study looking at effects of exercise challenges

    Any reason why they are only seeking women for this particular study?
  2. C

    New (Feb 2015) petition to the Whitehouse on Ampligen for ME

    Can patients outside the US also sign this petition?
  3. C

    nothing effects me at all

    Same here. MB12 gave me big boost in energy for about a month. Then had a big crash and now it doesn't matter how much I take - no effect. Certain abx gave me almost instant and complete relief of the worst symptoms, especially pressure in the head and cognitive dysfunction. As with MB12 it...
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    12 June 2014: Norway Multi-Site Clinical Trial: Funding and Commencement Update

    Imagine being told you were in the placebo group after 2 years! If someone makes a big discovery in the pathophysiology of ME before this trail is published, which explains the positive effects of rituximab on the illness, would it then be possible for doctors to use the drug on an experimental...
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    Island Offshore donates 400,000 kroner for ME research

    "immunomodulatory agent duck" Oh google translate you. Glad to see one country in the world takes this seriously.
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    Brain damage/dysfunction and substances that give near remission

    Hmmm..I know Baraniuk did scans of the brains of GWI patients and found abnormalities in the nerves, or something to that extent. A common finding in CFS is reduced blood flow in the brain. Also UBO's - unidentified bright objects on MRI's. Not sure if these findings are a cause or effect of...
  7. C

    Please have a look at my symptoms

    Have you had your thyroid checked? Hashimoto's can cause sensitivity to cold.
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    Fantastic doctor in Cape Town

    I'm also in South Africa. How much are you paying for the e. Coli pbx? I've wanted to try it myself but as you say it's not available here.
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    Researchers identify bacteria as possible trigger for MS

    Chlamydia pneumonia and rickettsia have also been linked to MS in the past. There's a genetic component in MS as well so I wonder if this isn't just another possible trigger which doesn't reveal much about the disease or how to treat.
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    Has anyone on this site cured him or herself of CFS/ME? Did I?

    There's some kind of general consensus that you have to wait 5 years before you can claim recovery. Think this rule is related to cancer, not sure so don't quote me on that. Did you notice a turning point in your illness - a date when things seemed to start improving, if you look at your...
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    Conspiracy theory stuff, but interesting.

    CFS may have been with us since the 19th century in the form of neurasthenia, the description of which is similar to CFS in many respects. Psychiatrists hijacked it in the beginning of the 1900's (sound familiar?). Thereafter the definition was broadened so much that almost any nervous issue...
  12. C

    A LOT of totally incorrect/wrong information and advice given

    Look, we're on the same page here. There was a misunderstanding. I agree with leokitten about some advice on this board. It's a pet peeve of mine to hear the term "adrenal fatigue" for example. But there's a lot of good information and advice, the majority is in fact. It's the best we can do...
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    A LOT of totally incorrect/wrong information and advice given

    Nevermind, see it was edited by a mod. Yes I agree with you now. In my own case, I'm still on abx for positive bacterial infections and it has made a difference. But I see many people who are on abx for months (even years) with no effect. I see that as a dangerous and irresponsible practise by...
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    A LOT of totally incorrect/wrong information and advice given

    I'm going to delete my inflammatory post on page 2. I apologise. But hey, seems at least one person had a chuckle ;)
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    A LOT of totally incorrect/wrong information and advice given

    I'm not saying viruses can't cause this illness or be reactivated because of it. But bacterial infections can also play a triggering role like we see in Post Q fever, post lyme, post rickettsia etc. Likewise, so can physical trauma, mental trauma, chemical exposures etc. But how can you say you...
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    A LOT of totally incorrect/wrong information and advice given

    No one knows what the role of viruses in ME is, if indeed they even do play a role. We can speculate, as we do on this board. But no one knows yet. Why don't you tell us a bit more about what you think of Rituximab? I'm personally interested in that and have tried reading a bit of literature...
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    A LOT of totally incorrect/wrong information and advice given

    You've read, besides presumably tonnes of information and media on the internet, all of the literature on CFS - over 5000 (or more?) papers since being diagnosed? I must say that is quite a feat. I don't think even top (and superbly healthy) CFS researchers are capable of doing that. When were...
  18. C

    Trying to decipher my GI symptoms

    Have you tried Betain HCl for undigested or poorly digested food?
  19. C

    Is this normal brain fog or a crisis?

    Start worrying when you do something and people remind you that you've already done it and you have no recollection at all of doing it. These memory problems you describe are universal in ME, judging by accounts of countless others, and I experience them myself. There's hope though: people who...
  20. C

    Lack of Social Skills due to CFS?

    Probably has something to do with the cognitive deficits and sensory overload in CFS. A lot of concentration is needed in conversation - at least relatively speaking. When in larger groups you can multiply that need. This makes online communication my preferred choice. I can do it on my own...
  21. C

    Finger nails

    Have also noticed about a year into illness that my half moons on my nails disappeared after getting ill. Does anyone know what the reason may be? Also have small indentations that look like pin pricks.
  22. C

    Anyone else have severe tremors?

    Yes, I've had this since about a year into my illness. Exactly like you described, usually worse at night or after some kind of exertion. Epsom salt baths before going to bed have helped a bit. I think it's due to nerve impulses continuing to fire when the muscle should be relaxing instead...
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    The connection Vol. 2: Adrenal fatigue and leaky gut

    I don't know much about leaky gut syndrome, but it sounds like the effects ascribed to it is still a hypothesis. Indeed there is no science behind "adrenal fatigue". The studies looking at HPAA dysfunction in CFS reveal adrenal insufficiency due to signalling error. The brain, for some reason...
  24. C

    Reducing sleep aids experiment

    You shouldn't have much trouble dropping melatonin as it isn't addictive or habit forming. The trick is to get your brain to secrete its own melatonin again. I think this inability to either secrete or utilize melatonin is a part of CFS, since it's something a lot of sufferers have trouble with...
  25. C

    The connection Vol. 2: Adrenal fatigue and leaky gut

    Is "leaky gut" an accepted medical term? Because "adrenal fatigue" is a term conjured up by quacks and charlatans. If your adrenal gland really is fatigued, it won't be able to produce cortisol at all (which is different from what is seen in CFS), and you'll end up in a serious condition which...
  26. C

    Frustration and confusion

    You might want to check out post-concussion syndrome. However, it won't be of much help because there's no definitive way to diagnose it and medical treatments aren't much better than what you've already received eg. amitriptyline. Other treatments for it include antidepressants and...
  27. C

    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    We really need to oppose this IOM contract with all we have. It seems to me the IOM is being used as some kind of Final Solution to the CFS/ME/GWI problem. They are pursuing their goal relentlessly, the GWI patients having been their first victims. I don't see any good faith behind their...
  28. C

    Frustration and confusion

    What kind of head injury did you sustain? Did you have concussion?
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    Stomach pain and cramps after painkillers.

    When I take tramacet I'm more likely to have pain and spasms where my gallbladder used to be before it was removed. Not immediately, usually the next morning. May have something to do with opiates and its effects on the stomach in my case.
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    Frustration and confusion

    I've also had the phantom mouldy/chemical taste and smell. I've used Nystatin about 3 times when my tongue were coated and it helped. I've never had a sore throat since getting ill. Only mildly swollen glands at one stage, otherwise normal. You might want to ask for a benzo to take the edge...