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Bump. It's starting.

The IOM (and now CDC) diagnostic criteria start off with loss of function: "A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities". Only after loss of function are fatigue and PEM mentioned.

Self reports not reliable? Perhaps a bimodal scoring system could help with this.

That works. Thanks.

Just FYI, I couldn't get the "Take Action" button to work. Tried 3 different browsers (Firefox, Safari, Chrome).

Apologies for lack of clarity. I didn't mean to suggest any relationship between NICE and the CDC. What I intended to say is that Healthwise itself considers NICE and the CDC top level authoritative sources for its own ME/CFS treatment recommendations. Changes to NICE guidelines could affect...

This will also have an impact in the United States. Healthwise, a major medical content provider which continues to recommend GET and CBT, has stated they are watching NICE guidelines closely. Healthwise apparently considers NICE just as authoritative as the CDC.

The QMUL student newspaper has covered the PACE Trial data in the past. Time for another article? http://theprintnews.co.uk/?s=PACE+Trial

Domain name isn't resolving for me. Seems they are still having some server issues at Virology. ETA: I switched my VPN to another node and it resolved. Maybe just a hiccup.

Dr. David Tuller from Berkely University? Should be "University of California, Berkeley". As Wikipedia says about UC Berkeley, "Not to be confused with Berkeley College, Berkeley College (Yale University), or Berklee College of Music." Guess we can now also add the mythical "Berkely University".

Good suggestion, I will include this when I have contact again with the California Department of Public Health. I did, however, already include the NY State Health Commissioner comments, which were from last May. The CDC made it rather clear in their letter to me that they were leaving it up...

It would have been nice if somewhere along the process I was given a case tracking number that I could refer to. Not to mention I had to submit 3 times on CDPH website before it went through without an error. When I have more energy, I may revisit this.

An update. As recommended in the CDC response email, I did contact the California Department of Public Health with a complaint about my healthcare provider continuing to recommend GET for ME/CFS. I received a simple reply: "Thank you for contacting the California Department of Public Health...

I think we are agreeing from different sides. In my opinion, the message about GET harm now needs to move from academia into clinical practice.

That is really the question, isn't it? I can show the letter to my doctor, but it probably won't get any further than that. I'm convinced the answer (at least in the United States) lies in the federal government reporting on the harms associated with GET. PACE has been discredited. The CDC has...

Will be very interested to see what OMF studies get started this year. I look forward to participating in as many as I can. :) Thank you Pineapple Fund!

I had the pleasure very long ago of being sent to this quality licensed practitioner. He mysteriously vanished one day and I had to get another referral. :speechless: http://articles.latimes.com/1998/nov/20/local/me-45588 Rather astonishing he was given back his license after his first 6 month...

1978 was also the year of my viral infection onset. Psychiatrists must have felt left out. But they certainly made up for it later on.

I'm convinced you are correct: GET harm is the key. PACE has been discredited, but that isn't enough. We need an official statement that GET can cause patient harm. In my email to Healthwise, the evidence I used was a quote from the New York State Health Commisioner, Howard A. Zucker, M.D...

For those interested in the gut and inflammation. http://www.bbc.com/news/health-42830995 ETA: Link to paper on which article is based.