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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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  1. F

    Should Physical exertion and Mental exertion be separated for PEM?

    Several points: - My "objective" cognitive "PEM" testing comes from extensive neuro-psych evaluations at Harvard Medical School (in studies concerning brain fog associated with Lyme Disease) - My "objective" physical "PEM" testing comes from Cardio Pulmonary testing at the Miami VA and...
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    Should Physical exertion and Mental exertion be separated for PEM?

    From the comments so far PEM sounds like unwellness. For PEM to be recognized and respected the definition must be tightened with a simple test to prove whether it's present and whether it is only specific to CFS. Otherwise it will end up like "fatigue" which as we have seen can be manipulated...
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    Association of Active Human Herpesvirus -6, -7 and Parvavirus B19

    One must compare anti-viral treatments (or anything else for that matter) to doing nothing. Sure there are consequences of any treatment but in long term ME there are also consequences to doing nothing such as inability to support oneself and in the US that means being on Medicaid which can...
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    hypertension, not hypo

    I used to have low bp. Now it bounces around from high to low within a few hours of measurement. Not sure how common that is.
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    CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

    Unfortunately, the actions of the CDC don't line up with your speculation. The "Dear Sir" letter is a fact and underscores from day one the CDC position on the illness. As mentioned before, Reeves was clearly over his head. A competent person who really wanted to make progress would have...
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    CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

    It was most likely not an accident that he was in so far over his head.
  7. F

    Dr. William Reeves dies

    Personally, I think a lot of these organizations should be audited as to whether they are truly non-profits and operating in a manner that fits with their stated goals. I would agree the tone of this letter seems to go well above scientific concerns.
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    Dr. William Reeves dies

    How can anyone affected by this disease not feel like the bad guy? I feel like the bad guy from the perspective of the medical establishment, the government, insurance companies and to some extent family and friends (lucky in this area but still feel it). If you don't feel like the bad guy you...
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    Dr. William Reeves dies

    Until this disease is defined well beyond even ICC this will continue to be the case that there is going to be major conflict. There is no one patient community there are many patient communities under this giant tent known as ME/CFS. Moreover, as we've seen with Wessley, conflict will be...
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    Dr. William Reeves dies

    I think a number of people here are suffering from Stockholm Syndrome.
  11. F

    Dr. Peterson Talks! On Ampligen, Autoimmunity, Pathogens and His New Partnership

    Checkered past compared to what? Merck: http://news.consumerreports.org/health/2011/11/dept-of-justice-fines-merck-nearly-1-billion-over-vioxx-ads.html Merck et al http://www.usatoday.com/news/washington/story/2012-03-05/health-drugmakers-fraud-fines/53372792/1 FDA (Whistleblowers)...
  12. F

    Heat & Tachy

    Good question. I get Tachy when hot and assume this is an ANS issue but don't really know.
  13. F

    Immunologist recommending flu vaccines

    Some have a different take but the only way I would take a flu vaccine is at gun point or in a medieval torture device.
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    ME/CFS is a mast cell disorder (hypothesis)

    Great so how do you clear infections caused by low NKC? If we could do that we probably wouldn't be here.
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    ME/CFS is a mast cell disorder (hypothesis)

    Yes, Theo Theoharides is the Mast Cell guy from Tufts who has been to numerous ME conferences including last year's SOK @ NIH.
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    ME/CFS is a mast cell disorder (hypothesis)

    You really need to provide some support for those statements. I don't think anyone is saying that mast cell activation is the be all end all. If one treats the mast cell activation it may provide a lot of relief and be one less thing to deal with. Clearing what infection? I've not seen...
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    ME/CFS is a mast cell disorder (hypothesis)

    I agree with you. I think it's possible that it is the cause for a few people and maybe a contributing factor to others. Unlike with ME there is accepted treatment for mast cell disorders. More importantly there is acceptance in the medical industrial complex of mast cell issues. This offers...
  18. F

    "Joint Hypermobility and CFS"

    Hypermobility is also associated with being susceptible to mold issues - genetic pre-disposition.
  19. F

    ME/CFS is a mast cell disorder (hypothesis)

    It is possible to have Mastocytosis or Mast Cell Activation Disorder without the skin issues. It certainly makes the diagnosis easier if you have them. I've heard people are treated by the experts even if they don't have the markers, ie they have many of the symptoms and respond well to treatment.
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    Might go to Dr. Klimas' office

    Dr. Klimas has a device called Ares that can be sent to you. You put it on your head. It's not as good as going to a sleep center but it records a lot of important info. You might think of doing that first. It might be good enough and you don't have to go through the hassle of going to a...
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    ME/CFS is a mast cell disorder (hypothesis)

    I'd stick with an Immunologist who is experienced with complicated immune disorders. An allergist may not have the depth of knowledge on the intricacies of the immune system. It's probably also worth going to major medical center like Brigham and Womens in Boston where there are specialist who...
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    c4a/gcmaf

    I am confused by the TGF Beta statement by de Meleir as I thought a lot of us have elevated TGF Beta. I have both high TGF Beta1 (21,000 last check) and C4a (67,000 last check). However, I fall into a biotoxin sensitive group where high values aren't unusual. I've been told that it may not...
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    Might go to Dr. Klimas' office

    We can only hope. But it may be a side effect of expanding the practice. It was a somewhat collegial atmosphere but that may change now that it is a bigger and more complicated office.
  24. F

    Might go to Dr. Klimas' office

    It's been disappointing so far. I used to be able to get some information between appointments but with this move my requests and calls have gone into a black hole. I hope this changes because it's making things very difficult for me right now!
  25. F

    Pharma overtakes arms industry to top the league of misbehaviour

    UK companies are making US ones look well behaved these days. Doubt we'll see Trine write about this. I wonder if some of this dough goes to friendly PR consultants like Trine.
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    Supreme Court Lets Affordable Health Care Act Stand....Implications for ME/CFS

    I am not touching this one except to say that US healthcare costs are unsustainable with or without Obamacare. Either way the healthcare system is more like dealing with the DMV than Amazon or Apple. The real problem is that more and more the "customer" is not the patient but a third party...
  27. F

    A neuro-immune model of ME/CFS.

    I think it's a fairly good stab at a hypothesis. There are parts that are stretches but it resonates pretty well for me. I'd love to see other documents that make such an attempt. Maybe jeffrez could provide some other examples since he seems to think there are many out there that are a lot...
  28. F

    Now that CFSAC's over, what should we do?

    I hope in the end we can agree on no more than 5. Any more than that is too much. This committee has proven they can't walk and chew gum at the same time. I really don't think it's a great idea to scrap what the CDC is doing with ME. That doesn't seem realistic. The goal really should be...
  29. F

    Is there any evidence that deconditioning alone causes pain and fatigue?

    Yes, the common mantra is generally summed up with "when in Central Park and you hear hoofbeats, think horses, not zebras". This works well when you're a horse but when you are that stray zebra you're out of luck.
  30. F

    Myhill sues Jonas

    LOL - it's always rich when Quackwatch is quoted. The website owner is one of the bigger over-promoters of the idea that conventional medicine good; anything not brought to you by oligopoly drug companies and the medical industrial complex is dangerous (to the bottom line) and must be regulated.