• 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

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    From Bedridden to riding my bike for 20 km-My Story

    I still need them. I am pretty sure that without drugs and without a regular workout plan I would be back in the bed in about a month. A recent study proved that those who workout regularly have about 1L or more of blood, this advantage goes away in 15 days. I think this helps too with the...
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    From Bedridden to riding my bike for 20 km-My Story

    Introduction Hi I'm Mark, and I am a long time lurker on this forum, I had severe POTS for about 8 years during which I was bedridden 90% of the time. I had very bad angina even when being in bed, confusion and all the symptoms that you know all too well. I was diagnosed with ME/CFS at...
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    Do I have Lyme? Do 90% of people with fibro really have Lyme?

    Lyme causes virus to reactivate because it weakens the immune system. I don't know what percentage of people diagnosed with CFS have lyme. I know that misdiagnosis is a big problem with lyme disease because the testings are not reliable. Researchers involved in HIV research were somewhat...
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    CFS/ME needs to go viral.

    Yep,very right, the fun part is the key.
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    New frontiers of fecal microbiota transplantation

    I would say that any medical procedure "if not standardized" is a gamble, microbiome transplants are safe even in immunocompromised patients,look at this study: http://www.nature.com/ajg/journal/v109/n7/full/ajg2014133a.html They screened patients with "HIV/AIDS (3), solid organ transplant...
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    Irritable bowel syndrome and chronic fatigue six years after Giardia infection...

    Very interesting, I developed IBS after an intestinal infection during a trip and CFS after four years of IBS, perhaps a Giardia infection modifies our microbiome long term?
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    Fantastic letter sent to microbe discovery project from a mother

    So moving and so true....
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    Dr Komaroff donates to Microbiome research and sends message

    I'm worried about that too, my feeling is that they think this is simply "another" study about M.E. Instead this is a much superior level of research that will be a milestone in M.E. research, To search a cause in the microbiome does make a lot of sense, ask De Meirleir! He is treating people...
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    Dr Komaroff donates to Microbiome research and sends message

    And if Dr. Komaroff donated we should all donate!
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    2014 Stanford ME/CFS Symposium Videos

    Yes Lipkin is incredible , I'm sure we will have amazing results form his study! Donate Donate Donate! https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677
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    2014 Stanford ME/CFS Symposium Videos

    Look also at the implications of abnormal beta-2 waves that were found in the ECG study, all hallmark symptoms of CFS.
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    2014 Stanford ME/CFS Symposium Videos

    Actually a third study is pointing toward an inflammatory state, look at the causes of Abnormal delta waves that was found in the ECG study: Cerebral inflammatory process.
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    2014 Stanford ME/CFS Symposium Videos

    I know that you covered the conference and that was Great, but to listen the actual conference is even more GREAT, I mean,plenty of high profile researcher are working on CFS,this was a dream a few years ago! Yes I did watch some of the videos, I found very interesting that two completely...
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    2014 Stanford ME/CFS Symposium Videos

    I see hundreds of responses to the MEME thread nonsense and about 4 about the wonderful research that has been done about ME, now as this is the future (serious research) and that is the past(psychobubble nonsense) Why don't we concentrate on the positive future instead of the negative past?
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    Acclaimed County Durham Doctor [Chandy] Banned from prescribing vitamins [B12] mustn't treat CFS now

    Wow...UK is not the right place to live if you have CFS/ME, a medieval point of view on the illness that,after all the scientific evidence,is really ridiculous what a shame.....
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    2014 Stanford ME/CFS Symposium Videos

    Thank you,very very interesting.
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    Tilt Training,an easy answer to OI,anybody tried?

    Actually all the scientific articles I read state: "Patients had to stand with their feet 15 cm away from the wall and lean with the upper back against the wall without moving." http://eurheartj.oxfordjournals.org/content/29/12/1523.full.pdf SOC said: "I believe this kind of treatment is...
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    Tilt Training,an easy answer to OI,anybody tried?

    Ok here's the right way to do it, I fear this exercise can crash people with ME but still my OI is so strong that I want at list to try.... anybody else tried this for OI?
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    Tilt Training,an easy answer to OI,anybody tried?

    Do you know if the knees are straight or bent? Yes,please I would want to read your blog,thank you.
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    Tilt Training,an easy answer to OI,anybody tried?

    I'm reading a lot of studies about the effectiveness of tilt training to help people with severe Orthostatic Ipotension,it is a very simple exercise: "The patient stand and leans with their upper back against a wall with their feet lanted 15 cm away from the wall,without moving. Session are...