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

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  1. W

    Retrovirus in MS

    https://medicalxpress.com/news/2019-06-multiple-sclerosis-endogenous-retrovirus-herv-w.html https://www.pnas.org/content/116/30/15216
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    The return of Polio to the USA? Is paralysis being mis-diagnosed as psychiatric?

    The fact that only affected children up to the age of 14 years are covered suggests that the figures should remain low. I am unfortunately aware of a case that woke up with paralysed legs shortly before his 18th birthday (in 2018). Everyone things that the Polio vaccine protects from paralyzed...
  3. W

    "I will argue that ME is simply a belief, the belief that one has an illness called ME" and other Wessely School quotes

    Here is another thread about this with a lot of quotes: Simon Wessely Research & Related Quotes
  4. W

    Chaotic Immune System

    You should not forget, however, that GMO seed has to be bought new every year and can´t and must not be propagated by the farmer himself like traditional seeds (hybrid offspring deliver no or very little yield). The seller can increase the price when they want and then the farmer needs a loan...
  5. W

    Question to those with neck issues/CCI/AAI etc

    If the muscles in the arms/legs are weak (due to lack of energy), then probably all muscles are affected, even those which should hold the head correctly. By the way, I got my "CFS" diagnosis about 2 years before an arm operation in which my neck was overstretched (visible in upright MRI)...
  6. W

    What Comes Next?

    You need something like a lymphocyte differentiation to see the different cells, some are to high and CD57+ and/or CD56+ are often very very low. (function and/or count) Also do a cytokine profile! Things like Interleukin Receptor 2. Then test for viruses.
  7. W

    What Comes Next?

    What about your immune system, count of NK cells? Has there been any improvement in these, especially NK cells? Otherwise, I guess the immunodeficiency is still there (if there was one.).
  8. W

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    Have you ever had a closer look at the SEID/IOM documents? Have a look what it says there: So the most severely affected were not considered at all! That would be like ignoring the cases of cancer which will die soon.
  9. W

    Starting Psychotherapy

    Check your genes, if you can handle antidepressants! Else they contaminate you. In my view: If your sickness is psychological then you don't have ME. For me first it looked like that you are so severe that you can't talk what is needed for a Psychotherapy...
  10. W

    Are There Bacteria in Your Brain? A surprising new result catches the attention of the neuroscience

    Other relating articles, sometimes 3 years old: Interview with Robert Moir: Infection in Alzheimer’s/brain microbiome http://microbeminded.com/2017/12/18/interview-with-robert-moir-infection-in-alzheimers-brain-microbiome/ The newly discovered lymphatic system in the brain, and a possible...
  11. W

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    I know. I just wanted to know what official criteria he used. And that's the SEID criteria where all (well, not all, MEAction seems to use it) people fight against because there are better like ICC available which are more accurate.
  12. W

    how relevant is EMF to ME/CFS?

    Do you know that there are already hidden mobile transmitter in cities with most no warning signs like in hydrants? Do you know that you should never stand next to it (says the producer)? Do you know that technicians are switching of mobile transmitters before they do maintenance? If you really...
  13. W

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

  14. W

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    No, if SEID get's official criteria then you have to wait 6 months. Who would treat you if you do not yet match the criteria?
  15. W

    Should I Start Full Lyme Treatment?

    The problem with Lyme tests is finding the things at all; if they are not in the blood, PCR etc is negative. Organ biopsy is unfortunately extremely difficult. Have you already taken (much) antibiotics? If not, it could really help. Because then there are probably no resistances and the...
  16. W

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    ME vs CFS vs SEID: Look at this image, scroll down to the last part: http://www.shoutoutaboutme.com/wp-content/uploads/me-cfs-seid-chart-via-arainbowatnight-smaller.png The most important sentence is If you are only diagnosed after 6 months (SEID) then most of the pople have gone so far...
  17. W

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    So, I couldn't sleep because of this topic unfortunately... With the help of https://www.mediafire.com/file/w1d9gxgg41nsvh2/Dr.+Kaufman^J+final.pdf I was able to figure out what criteria he uses in this video. These are really the Systemic Exertion Intolerance Disease (SEID) criteria. You can...
  18. W

    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    Just found this video from Dr Kaufman: Can someone tell me what criteria he uses to diagnose his patients? He uses PEM so it is not International Consensus Criteria (ICC) which uses PENE. It also looks not like Canadian Consensus Criteria (CCC). And this "this core featuress of this illness...
  19. W

    Anybody else wondering about the children in the news

    https://www.mdedge.com/pediatricnews/article/143629/infectious-diseases/lessons-emerge-europes-first-enterovirus-related
  20. W

    Anybody else wondering about the children in the news

    2017 Germany: https://www.aerzteblatt.de/nachrichten/77546/Neues-Krankheitsbild-Auch-in-Deutschland-treten-polioartige-Erkrankungen-bei-Kindern-auf 2016 Spain (Catalonia): https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(17)30185-4/pdf
  21. W

    lymphocyte typing result

    I would say typical result for ME. Or am I wrong? Low CD4, CD8, CD56, CD57 (lyme?) EBV IgG - is this very high? Without IgM normal doctors will not treat, but maybe its required to do even without IgM showing "active" infection. See this for treatment of EBV and others...
  22. W

    disease symptom blood test treatment results webapp/database?

    I found this page. It offers many functions, except blood tests comparition: patientslikeme.com But we should keep in mind that this is a company and they sell data to make money: support.patientslikeme.com/hc/en-us/articles/201245750 (I would prefer a non-profit organization.)
  23. W

    disease symptom blood test treatment results webapp/database?

    Hello, what about creating a webapp/database where each user enters his data: - disease - symptoms - blood check-ups/tests - treatment/drugs - results of the treatment/drugs Target: - find similarities and differences - answer questions why some therapy helps some and harms others Is there...