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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. srmny

    The Role of Cytokines in Muscle Fatigue in Patients with Chronic Fatigue Syndrome

    This is a link to http://www.bmj.com/content/350/bmj.h227 This is a link to a rapid response Tackling fears about exercise is important for ME treatment, analysis I would like to draw your attention to an error in the rapid response from Chalder et al (1), most of whom were also authors of the...
  2. srmny

    The Role of Cytokines in Muscle Fatigue in Patients with Chronic Fatigue Syndrome

    I just read the Author's reply to Robert Courtney's Doubts over the validity of the PACE hypothesis Author’s reply We did a randomised controlled trial (n=640) and found two rehabilitative treatments, graded exercise therapy (GET) and cognitive behaviour therapy (CBT), added to specialist...
  3. srmny

    Cheney on Growth Hormone

    I started Humatrope when I was in my bed bound stage of CFS. I was tested and qualified for insurance to pay. I have never really understood the dosage so I think of it in "clicks" of my pen. I had been sick for 3 years and was treated by the head endo at Columbia Presbyterian in NYC. I was...
  4. srmny

    Human Growth Hormone

    Hi, I began hgh injections during the acute stage (severely ill) of my illness. It made me feel much worse. I continued to take it because my sister had CFS like symptoms and dramatically improved with it. She also lost 3O lbs in just a few months. Every 3 months my dose was increased and I...
  5. srmny

    who is going to CFSAC meeting Oct 12-14?

    Hi, I got an email this afternoon from CFSAC@hhs.gov. I have a 5 minute speaking slot on Wednesday Oct. 13th at 5pm. I had submitted only a short statement since I did not have much time to write it but did not want to miss the deadline. I plan to revise/rewrite it and am hoping to pull...
  6. srmny

    Campaign to have Mikovits speak at the XMRV conference!!!

    I am with V99 and muffin on this one. But I am even more concerned about Switzer giving the talk on "Assay Development". That feels a bit like a slap in the face. Here is the ink to the program http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0
  7. srmny

    CDC XMRV Retrovirology Study on CFS Published

    "revised" Fudaka? I looked at the CDC abstract quickly and I am pretty certain that it says the study is using "revised" 1994 Fudaka. Isn't that just the Reeve's definition? That makes sense since the paper is saying that by virtue of having physical symptoms we do not have CFS. But on the...
  8. srmny

    ERV (Scienceblog.com)'s take on CDC's paper....and Alter's paper's review process...

    Erv's "Information" I found the explanation of paper submission at PNAS (by scienceblog.com) sounded like she was making it up as she went along and trying hard to get a response from one of us. "Sooooo... the 'positive' paper was submitted by Harvey Alter to PNAS. Harvey Alter is a NAS...
  9. srmny

    A Moment of Reflection: Please Read!

    I agree with Mark's post #25. I also applaud Alex's post #42 - it was positively poetic. But I could have written (though probably not as well) sunlady's post #31! Thank you all for expressing my thoughts so well - I am having trouble reading today and writing is difficult. To omerbasket...
  10. srmny

    CDC replication study delayed in order to prepare a press release?!

    June 11th Teleconference Was someone looking for the June 11th press release. Is this what you are looking for?
  11. srmny

    Ehlers Danlos OR joint Hypermobility Syndrome

    I was diagnosed with hypermobility by a physiatrist years ago. He also diagnosed me with myofascial pain syndrome. Of course, myofascial pain syndrome became fibromyalgia which became CFS. My mother was also hypermobile as a child and has symptoms of fibromyalgia. Getting older has made me...
  12. srmny

    Participate in Virtual Lobby Day Today PLEASE!!!!!!

    Thanks shebacat! That was a great post. I hope everyone will be able to send out the emails. I wish advocating could always be set up that way. I feel like I have accomplished something worthwhile without making myself sick over it!
  13. srmny

    YouTubeVIdeo off CFSAC MAY 2010

    Flybro, Thank you so much.
  14. srmny

    Article: Retiring CFSAC Patient Rep Rebecca Artman Talks

    I learned so much from this article. Both questions and answers were well thought out and informative. Rebecca is inspiring. She has shamed me into rethinking some of my "I'm too sick to advocate" beliefs. Thank you Cort.
  15. srmny

    sedimentation rate during remission?

    Thanks for the link to the diagnostic tests. My sed rate has never been higher than 3 and stays closer to 0.
  16. srmny

    Is it time to take the pledge to NOT donate blood?

    I am afraid I have to agree with jackie on this - I feel like we are incredibly contagious. I have never known any one else with ME/CFS (other than patients I have met in doctor's office or at meetings) but I became ill a couple of years after my husband was diagnosed with non-hodgkins...
  17. srmny

    Is it time to take the pledge to NOT donate blood?

    Sasha, "I think that one possible reading of this would be that you meant people to carry out the threat - you may not have intended it to mean this but I think there's an ambiguity that arises because of "Of course, the ultimate goal is to NOT give blood. But we will have all month to consider...
  18. srmny

    Is it time to take the pledge to NOT donate blood?

    Dannybex, your question is a good one and I can't answer it. But if I consider the PURPOSE of a petition promising to NOT donate blood and perhaps calling on others to join us in NOT donating blood, it is not germane. We are "using" the blood donation issue to inform the public that our...
  19. srmny

    Is it time to take the pledge to NOT donate blood?

    danib, Again, I do not believe that anyone was "urged" to donate their blood. Please reread the thread from the beginning. I am sorry you feel so uncomfortable about this issue and I am sure you are not alone. I am concerned I will spend much of my limited energy writing a petition people...
  20. srmny

    Is it time to take the pledge to NOT donate blood?

    Hi alphahusky, We will NOT even be threatening to give blood. But you got everything else right. Initially I had thought we could address the "possibility" of our giving blood, collect signatures throughout the month of May and then on May 31st announce our decision. I had thought the...
  21. srmny

    Is it time to take the pledge to NOT donate blood?

    "I have tried to make it clear that we would not be giving blood - only trying to make people aware that we can give blood. We have repetitively asked our government to ban us from giving blood but we are refused every time and we think the public should be made aware of it. I know that none of...
  22. srmny

    Is it time to take the pledge to NOT donate blood?

    valia, I totally agree with you - if the PWCFS "accuse" the CDC of failure to protect the public everyone can sign it. We could start collecting signatures on the ME/CFS websites and the PWCFS could ask their friends to read and sign. We would be both educating and protesting while scaring...
  23. srmny

    Is it time to take the pledge to NOT donate blood?

    Kurt, I am most interested in public awareness right now and I think we need to tell the story the CDC does not want told. We have a horrible disease that never goes away and makes our lives miserable. You (the public) do not want this disease and you have a vested interest in telling your...
  24. srmny

    Is it time to take the pledge to NOT donate blood?

    Hi valia, I think that is a good idea. The question is, can we realistically do it? The last time I tried to "protest" I managed to sit for 7 hours for 2 days. But it took me weeks to get back on my feet. It might work if there is something like a national blood bank day where people are...
  25. srmny

    Is it time to take the pledge to NOT donate blood?

    danib, I am a bit confused - why are you on the advocacy thread? And why do you think we will be victims of hate crimes?
  26. srmny

    Is it time to take the pledge to NOT donate blood?

    I have tried to make it clear that we would not be giving blood - only trying make people aware that we can give blood. We have repetitively asked our government to ban us from giving blood but we are refused every time and we think the public should be made aware of it. I know that none of...
  27. srmny

    Is it time to take the pledge to NOT donate blood?

    Thanks for the moral support valia. I agree with you completely. V99, I actually kind of like your idea. Let's pledge to not donate blood and count how many live's we spare from this horrible disease? Although I would not know how to figure out how many lives = pints? I think that your...
  28. srmny

    Is it time to take the pledge to NOT donate blood?

    Since this is the activist thread I do want to make one point. It is clear that others think that I am out of line. Honestly, I can't understand it. When we had the last CFSAC meeting last October, many of us tried to rally the troops to get to DC and give testimony before the CFSAC. We...
  29. srmny

    Is it time to take the pledge to NOT donate blood?

    danib, You are actually with Sasha. If I am suggesting that we threaten to do something that is totally legal, perhaps even encouraged by our government, and am making it clear that we may or may not commit that legal action - where is the violence? All I am trying to do is commit peaceful...
  30. srmny

    Is it time to take the pledge to NOT donate blood?

    Sasha, Your reply is exactly the same one I used 15 years ago. Perhaps that is one reason we are so badly treated? We are always concerned about our image. Our image has been crazy and lazy no matter how we behave. I am not threatening to actually give blood, either as a group or...