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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. SOC

    New blog by James Coyne 2.1.16 Glimpses into the assault on data sharing

    Any sympathy for people she drove off PR? It doesn't go one way.
  2. SOC

    James Coyne standing up for pts with ME like no one else

    Resistance is futile.
  3. SOC

    HHS, NIH, AHRQ and CDC respond to Aug 2015CFSAC recommendations

    PS Please feel free next year to once again waste your time and ours preparing another carefully thought though list of recommendations for us to read and ignore. We sincerely want the ME/CFS community to feel like they have a voice in this process. Keep up the good work. Most sincerely, HHS...
  4. SOC

    HHS, NIH, AHRQ and CDC respond to Aug 2015CFSAC recommendations

    Dear CFSAC, Thank you for your comments. We are going to do whatever we please without regard to your suggestions. Love, HHS, NIH, AHRQ, CDC
  5. SOC

    Mycoplasma pneumonia treatment. Is Chronic or acute different protocol

    Not really, I'm no immunologist. :) But here's the best I can do with layman's knowledge and language. When you first get an infection you produce IgM antibodies. These are relatively short-lived, so IgM titres are only high after a recent infection or possibly a re-exposure. Slightly later...
  6. SOC

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Many who see these doctors and are able to follow their treatment plans are getting substantially improved quality of life. Others don't, however. I doubt all of us have the same illness, so treatment that works for some likely won't work for others. I would guess that those who have a...
  7. SOC

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    We started with Dr Lerner. After several years we switched to Dr Rey, who is Dr Klimas' associate at INIM.
  8. SOC

    KCL education module on medically unexplained symptoms

    Three cogs arranged that way are a total failure. They don't "interact". They lock up. They wouldn't move. The epitome of bad design. So what message are we supposed to take from that?
  9. SOC

    PACE Trial and PACE Trial Protocol

    I got a message that it's been removed. Intimidation, perhaps? Or maybe Peter Kemp just changed his mind about it. :p
  10. SOC

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    No big deal. We just don't see eye to eye a lot of the time.
  11. SOC

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    I sincerely doubt admin is the least interested in having me represent PR. ;)
  12. SOC

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    I tried to be clear in saying major medical hypotheses, that I don't think our rep needs to be supportive of every fringe hypothesis. Someone who, for example, rejects any notion of autoimmunity, pathogens, or immune dysfunction playing a part in the illness would not represent the membership...
  13. SOC

    Lipkin/Simmaron collaboration: your donation tripled if you give by 31 Dec: "3-5 yrs to solve CFS"

    Note there is a box near the bottom of the page where you indicate what you are donating for specifically. The $2 for $1 drive is in the drop down list.
  14. SOC

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    I'll add that our representative should have no pet dismissals, either. Someone who outright rejects one or more of the major medical hypotheses would not represent us well, any more than someone who pushes his/her pet hypothesis. We need someone willing to consider and discuss fairly and...
  15. SOC

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    I see value in this representative being a patient, or perhaps a caregiver who lives with this illness on a daily basis. Even our most experienced clinicians can't really understand what we're dealing with on the most fundamental human level and I think that is a part of the process that has...
  16. SOC

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    My daughter and I have the ICC defined illness. She has gone from about a 5 to 9.5 on the PR scale. I've gone from 1 or 2 to 6 or 7, both of us under the treatment of ME/CFS specialists. So it's possible for some of us, at least, to get significant improvement. Our improvements were not...
  17. SOC

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    Agreed. Goldacre's proposal does lead to some interesting possibilities that may backfire in a small way on the PACE researchers, though. The PACE authors have been restricting access to their data to everyone on the grounds that crazy, hostile patients will use it to undermine their valuable...
  18. SOC

    'A postmodernist theory of medicine: "CFS/ME" and the PACE trials' (by Mary Schweitzer) (Dec 13)

    I'm finding there's a lot of Through the Looking Glass about PACE, and BPS hypotheses, research, and researchers.
  19. SOC

    Help with Acyclovir and questions please!

    Valacyclovir is a prodrug of acyclovir. It was developed long after acyclovir to improve oral bioavailability of acyclovir. Basically, valacyclovir is the new and improved version of oral acyclovir. Valacyclovir turns into acyclovir in the body, so in that sense it is the same medication...
  20. SOC

    Prevention Magazine Article on ME/CFS

    Good stuff. :thumbsup: This is the kind of thing we've been looking for, including quotes from people knowledgeable about the medical reality of the disease. It starts: Please click through and give this a lot of traffic.
  21. SOC

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Those of us who have achieved substantial improvement under the care of specialists who understand the disease would beg to differ with you. There are some effective treatments. The problem is there's likely to be multiple conditions under the current label ME/CFS, so the specialists need to...
  22. SOC

    Interview with Harvard neuroscientist Dr. Michael Van ElZakker: chronic fatigue vagus nerve link

    Okay, I got the info. :D P-Stim devices and the newer developments (NNS?) are generally prescribed by doctors who deal with pain, so any number of them are possibilities. It becomes a question of whether the particular doctor buys into the technology or not and can be bothered to know how to...
  23. SOC

    When did your neurological symptoms start?

    I have never had the buzzing, vibrations, weird physical pressures, pins and needles, blocking feelings or any of that type of neurological symptoms that I often hear described. However, I have had severe cognitive dysfunction, some sound sensitivity, and autonomic problems. The major...
  24. SOC

    Response to article re PACE

    Perhaps because knowledge does not stagnate. Much has been learned over the past 50+ years. Historic descriptions of very few diseases are 100% accurate. I doubt even Ramsay would want people to stick religiously to the best description he could make of the disease many years ago. He was...
  25. SOC

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Great work! I'm sure many other people wish they could achieve what you have. :thumbsup: Sorry I mentally misplaced your previous posts about your treatment. It's good to be reminded that the information is here at PR for other members to find.
  26. SOC

    Response to article re PACE

    Have you read the work by Snell, et al? Are you aware of the results of 2-day CPET testing? PWME typically have a much lower anaerobic threshold (AT) than healthy people. We exceed our AT doing ordinary tasks like showering or walking across a room. Healthy people exceed their AT with heavy...
  27. SOC

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    Interesting. :) Were they paid for by insurance or a socialized medicine system, or did you pay out of pocket for them? If you got them through the NHS, I'm sure your fellow UK PR members would be interested to hear how you achieved that. It's not easy to get any system to pay for treatments...
  28. SOC

    New blog: Placebo effects are weak and reflect regression to the mean

    Any idea how big pharma is supposed to benefit from belief in placebo effect? o_O I would have thought pharmaceutical companies would prefer to sell expensive "real" medicines for real illnesses. Surely they're not getting rich off placebo pills. Do pharmaceutical companies even market dummy...
  29. SOC

    Nick Brown (good science star): My (current) position on the PACE trial

    Thanks, @Jonathan Edwards, for a clear, well-written, and sympathetic comment. We need more like that from other eminent scientists.
  30. SOC

    Nick Brown (good science star): My (current) position on the PACE trial

    Ditto. I routinely shared my data without taking the decision up the chain. It was standard practice to share data. Asking management if I could share data would have been like asking them if I could answer a ringing phone. I'd say the only plausible reason management is involved in this...