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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. L

    FUNCAP55 Assessing Functional Capacity in ME/CFS

    This is so useful. Thanks Rafa! I scored 144. The FUNCAP55 is the most accurate functional capacity questionnaire I've seen in 20+ years. It would be great if the Norwegians did this as a published addendum, and added a further step where one's results are plotted on the ME Severity inl HC...
  2. L

    What patient needs are most critical for an endowment fund to help out with?

    Thanks for sharing your ideas belize44! I know - too many of my friends are not getting adequate treatment, housing, homecare, disability income................. So I do all I can to advocate etc to change things, but this idea occurred to me to help people in the meantime.
  3. L

    What patient needs are most critical for an endowment fund to help out with?

    Thanks so much Jennifer! Great minds think alike. :D I will post on what happens, but with my life on severeME time it'll be a bit slow to find out what's possible. I'm hoping I can have enough $ to set up an endowment fund and pay the admin fees and provide a few grants. THen hopefully others...
  4. L

    What patient needs are most critical for an endowment fund to help out with?

    Unfortunately, having to get the help with the survey means you can't see the results here. I will come back and post the results when done if anyone is interested. Thanks for any help you can give. And please feel free to share the survey link!
  5. L

    What patient needs are most critical for an endowment fund to help out with?

    Hi all. I haven't been able to be here much in the last few years as it's too much work for my brain. I'm asking for your help. I'm working on my will, which got me working on an endowment fund, mostly to help out patients whose needs aren't being met in full, but also to encourage others to do...
  6. L

    Beta Endorphin Deficiency - The Elephant in the Room

    These assertions are contrary to what I know of the research. I know of no basis to support either statement.
  7. L

    Stanford 2015 Spring Newsletter

    Sasha: "I found that a little hard to read so I've selected the research news, flagged up exciting stuff in red, and broken up the text." Thanks so much for this Sasha. It's incredibly useful. I was also excited about the number of papers published and the ones on their way. I initially posted...
  8. L

    The third (second open) IOM meeting May 5th

    If I've got it right - only 1/4 of of the meeting is what they call 'open', It's a 2 day meeting, and we know the agenda for a 1/2 day. We don't know if Megan Arroll is gone or if she got moved to a closed part of the meeting.
  9. L

    new blog from Jeannette, HHS and the IOM Saga, Jan 2 2014

    HHS and the IOM Saga: The Definition of Insanity and a Bad Case of Stockholm Syndrome Posted on January 2, 2014 New Thoughts About M.E. blog from Jeannette Ketterle Burmeister http://thoughtsaboutme.com/2014/01/02/hhs-and-the-iom-saga-the-definition-of-insanity-and-a-bad-case-of-stockholm-syndrome/
  10. L

    Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

    I have to apologize. I flew off the handle after reading the first paragraph while I wasn't able to read the whole article, and I extrapolated that the premise presented in the first paragraph, that the community went into shock at the awarding of the contract to the IOM on Sept 23, despite...
  11. L

    Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

    Mark, you've missed an important part of the history here. This didn't start Sept 23. It started with HHS trying to ram through a secret contract with no terms with the IOM on August 30, with a 1 business day option to reply. The CFSAC has been calling for our experts to update the inadequate...
  12. L

    Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

    Exactly Justin. Most people seem to not know that in the 1st definition the IOM ever did, with Susan Vernon on their 'expert panel' for GWI, they referred to CFS as being a psychological illness ""Two specific therapies are recommended for people who have CFS: CBT and graded exercise therapy...
  13. L

    CDC Conf Call-Follow-up Poll: Would YOU do 2-day CPET if in CDC Multi-Site Study?

    I voted yes and have shared. I would love to see the results for the 1day test. I would vote NO, I would not take it as a stand-alone test it does not provide much info on health of PWME and can cause PEM, and perhaps extended relapse. The risk/benefit is not worth it while they are for the 2...
  14. L

    A Good Night's Sleep? Not with ME/CFS

    Do you have the links to the research that you cite? Thanks.
  15. L

    Article: Wanda Jones Talks/ CFSAC Disappoints/Agenda/Audio Call-In Set

    Nice one CBS! and there's more Monday, October 31, 2011, 9:30:00 AM ET Views: Total views: 131, (74 Live, 57 On-demand) "our committment to accessibility for all & the focus on our actions speak louder than words" (around 2:30) What are their actions telling us?
  16. L

    Mount Sinai ME/CFS Center

    Hi Nielk, This sounds so exciting. Can you tell me where you got this information and hopefully give me a link to it? thanks
  17. L

    Mount Sinai ME/CFS Center

    Hi klmrv, I can't find the Mount Sinai ME/CFS Center anywhere online or a link to the announcement about Singh/Schadt - very exciting news if it is so. Could you provide us with the link? thanks
  18. L

    XMRV-related abstracts from 15th International Conference on Human Retroviruses

    From 15th International Conference on Human Retroviruses: HTLV and Related Viruses, Leuven and Gembloux, Belgium. 5-8 June 2011 For easier reading and sharing XMRV Global Action has compiled the XMRV related abstracts here. 1. XMRV replicates preferentially in mucosal sites in vivo...
  19. L

    Ad for PART-TIME ADMINISTRATOR/DIRECTOR- CFS Research Fdn

    http://jobs.thirdsector.co.uk/job/333799/part-time-administrator-director/?utm_source=jobfeed&utm_medium=feed&utm_campaign=job%2bexport&ProcessedTrackID=55 PART-TIME ADMINISTRATOR/DIRECTOR Recruiter CFS Research Foundation Posted 13 April 2011 Location Hertfordshire Function Senior...
  20. L

    Office of Women's Health posts links to SOK

    I spoke with The Office on Womens Health and they have very responsively posted a link to the SOK ME/CFS Research webcast on their Illness and Disability page on the left side where it says In the News (http://www.womenshealth.gov/illness-disability/). & also posted it on the homepage under the...
  21. L

    Implications of Action for ME chair becoming chair of Irish Life & Permanent?

    Irish Life & Permanent announces Bowler replacement to chair group http://www.examiner.ie/breakingnews/business/irish-life-permanent-announces-bowler-replacement-to-chair-group-501126.html Wednesday, April 13, 2011 - 03:41 PM Irish Life & Permanent has appointed former UK post Office MD...
  22. L

    Self-critical perfectionism, stress generation, and stress sensitivity in patients wi

    Self-critical perfectionism, stress generation, and stress sensitivity in patients with chronic fatigue syndrome: relationship with severity of depression. kelly to CO-CURE [kl: It is possible that patients labeled with CFS in this study do not have CFS as it is defined using...
  23. L

    Harvard Medical School Medical Myths CFS: Names and Claims

    Medical Myths Chronic Fatigue Syndrome: Names and Claims By Robert H. Shmerling, M.D. Beth Israel Deaconess Medical Center http://www.intelihealth.com/IH/ihtPrint/WSIHW000/35320/35323/490819.html?d=dmtHMSContent&hide=t&k=basePrint Interesting. This, like the Harvard article on GET I...
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    Harvard Medical School hosts Howard LeWine, Brigham and Women's Hospital bringing GET

    Chronic Fatigue Syndrome: When Exercise Makes You Feel Worse http://www.intelihealth.com/IH/ihtPrint/WSIHW000/35320/35322/378080.html?d=dmtHMSContent&hide=t&k=basePrint Why do none of these "doctors" get that a) overdoing harms us b) that many of us are at a fine balance of barely...
  25. L

    Vascular MS Treatments Safe, but Efficacy Unclear

    http://www.medpagetoday.com/MeetingCoverage/SIR/25651?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&em=leelaplay@gmail.com
  26. L

    Some Parkinson's misdiagnosed as ME(CFS)

    Tate Mitchell posted this to co-cure http://www.ncbi.nlm.nih.gov/pubmed/21449012 Mov Disord. 2011 Mar 29. doi: 10.1002/mds.23563. [Epub ahead of print] Decades of delayed diagnosis in 4 levodopa-responsive young-onset monogenetic parkinsonism patients. Ling H, Braschinsky M, Taba P...
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    NIH Record: Pesticide Use Linked to Lupus, Rheumatoid Arthritis By Jan Ehrman

    NIH Record: Pesticide Use Linked to Lupus, Rheumatoid Arthritis By Jan Ehrman "Frequent or extended exposure to pesticides may increase the risk for developing autoimmune diseases"
  28. L

    Lo/Alter/Gill NIH VideoCast, Chronic Fatigue Syndrome: Is There a Virus?

    Fantastic work Bob. Thank you so much for this. This is so valuable for me and others like me who have difficulties listening. Wish I could pitch in and help fill in the blanks, but this, together with the slides is fabulous. sb
  29. L

    Could new techniques ease living with ME? by Miriam Stoppard, Daily Mirror

    Could new techniques ease living with ME? by Miriam Stoppard, Daily Mirror Looks like she likes upsetting people.
  30. L

    A Molecular Link Between Sleep and Liver Fat

    A Molecular Link Between Sleep and Liver Fat Scientists have discovered a molecular link between the body's biological clock and fat production in the liver. The finding may help explain why disrupting daily cycles, such as rotating shift work, increases the risk of diseases like obesity and...