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@Web Monkey Also, you could ask about the hallmark symptom of PEM and if they know that there is a worsening of symptoms, often 24-72 hours, after a patient exerts themselves.

Orthostatic Intolerance (as severe as POTS) OR Cognitive Issues are symptoms. GET and CBT has been removed from the CDC treatments page and from the NY Dept. of Health treatment recommendations.

Carol Head is applying for a voting member position on CFSAC and posted a Twitter message that we can sign the letter through a form on their website. https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00031

Here in the US, the FDA will allow only 100 people to use it at any given time. It is all out of pocket and the cost of the drug has gone from $25k a year to $45k over the last couple of years. That is just for the drug and does not include the infusion costs. But I hear it makes a huge...

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@Barry :emoji_thumbsup:

Welcome, @daktaras! :sun:

I am on Puritan's Pride Omega 3 Fish Oil suggested by my psychiatrist at his recommended dosage and I have had no positive effects on my pain or cognition. I have tried other fish oils in the past and told him so but he insisted I try this.

VIROLOGY BLOG'S TRIAL BY ERROR: Reporting on ME/CFS Update April 16, 2018 The Home Stretch...

I can't say I am overly impressed with psychiatry but for some time now I have been quite thankful not to live in the UK because I think what you have said pretty much sums up my opinion of the #UKpsychlobby.

No. It doesn't. Especially since it seems the fault lies in the fact that NHS is having staffing and IT problems and this case and its very bad outcome should not be taken out on the doctor. Do I think everyone should have healthcare? YES! Am I impressed with the NHS? Not really.

This is her site. http://microbeminded.com/ A microbiologist that suffers from ME/CFS. About: http://microbeminded.com/about-amy/ A letter to the ME/CFS research community http://microbeminded.com/2017/10/18/a-letter-to-the-mecfs-research-community-doctors-patients/ She did interview Michael...

It sounds like they are not funded well but put out great information. It was almost like the kind of setup someone would have in their basement and who knows, maybe it is.

That's what I was thinking. I can't imagine the Editor of the New England Journal of Medicine sticking his nose into a case like this. The current President of the US? Oh, sure. He would.

That's just it. The case definitions are important because we don't have a biomarker. And PEM is important even if it was not in the first case defintion describing ME. ICC did not exist then but most agree it most correctly defines ME. I have been diagnosed with CFS and I believe I first met...

Social Justice interview with David Tuller on his ongoing Trial by Error series. Hour long. 2pm Sun 15 Apr 2018 http://radioadelaide.org.au/program/a-peace-of-the-action/

Because I don't know the details of the case nor the difficulties being faced by the NHS, I would be interested in knowing what others in Britain/UK think about this case. There is a Tweet showing that the doctor was not given an X-ray in a timely fashion nor was the Rx administered immediately...

I wonder if not having PayPal slowed things this year. (I am pretty sure he did it through a crowd rise platform last year and they did have PayPal.) Many don't dare use a credit card and have deductions from their bank account or a debit card and some will only use PayPal for security reasons.

I crumble doing them and my taxes aren't complicated.