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This is exactly where my fear is coming from, @JemPD

We'll see what comes from it. Hopefully it won't be along the lines of Chalder, Moss-Morris, White, Crawley, et al. You know, the "experts." Given the track record, I can't help but have some fear. Maybe it will lead to some paradigm shifting like the IOM Report did. Hope that it is not...

I can't believe that Friedberg keeps getting funding for this kind of stuff, from the NIH no less. The NIH must have money to burn, it seems. :broken_heart: The frustration I feel about this adds to my pile of hassles. :confounded: Don't think it helps patients much.

CFS, as it was known then, was originally housed in the National Institute of Allergy and Infectious Diseases (NIAID) until it was thrown out from there and landed in the Office of Research on Women's Health (ORWH). For many years, this move was decried by advocates as, unless things have...

Or when you go to your primary care physician who concludes you are depressed when you are not.

Psy-pss and PSS-POR. :laugh: :rofl: :D :grinning: :joy: So appropriate! Thanks, NelliePledge and Hutan. Laughed out loud. Just what I needed today. :emoji_thumbsup:

David Tuller wrote about these Dutch research funding awards in his last two publications. I quote from one of his articles: "Last July, ZonMw posted an update about an 'adjustment' to the process of evaluating proposals. According to the update, key patient representatives would not...

Sure sounds like it to me.

Spot on! This is exactly what they do. The first time I came across this was some years ago when I first began educating myself about ME/CFS. I was reading about another British trial regarding "CFS" that was about to start (forgive me, I can't remember which one it was), and the main...

I also was told that it would take 12 - 18 months for me to recover. One of my regrets is that I told that to some people around me. Of course, that prediction did not come to fruition. I was surprised that one of them remembered what I said and held me rather accusatorily to account for why...

This whole situation is greatly distressing. I weep for us and for all future patients that may face this runaway push in medicine. It seems to me that this is all for the advantage of doctors who don't want to deal with these patients, and not for the good of the patients themselves. It...

I am so sick and tired of recent and fairly recent publications on ME/CFS, Long-Covid, and similar diseases throwing in the words "depression," "anxiety," "biopsychosocial," and making them more and more prominent in current discussions of these diseases. And now the terms FND and MUS are...

Thank you. Signed.

It seems to me that they are making it up as they go along, which only makes me have less trust in the medical profession than I already had.

:hug: Beautifully written. Thank you @Subtropical Island.

After struggling for many years with ME/CFS with a gradual downward progression, it was severe cognitive problems that made me finally quit my job. I had no other choice. I would sit at my desk reading the same sentence over and over again but could not comprehend it. People would talk to me...

Barry, in the U.S. we have Forever Stamps and they say "forever" on them. It doesn't mean "America Forever," but rather these forever stamps can be used even if you purchased them years ago and mailing rates have increased since you first bought these stamps. They are still valid and can be...

Yes, I would really like to know what their "rehabilitation programs" consist of.

Whenever I read this statement, I get a picture in my head of "an ME/CFS specialist clinician" waving a magic wand (only they have) over the patients before beginning treatments that ensure they will accomplish their magical thinking and produce the desired results they say they will and will...

Hope all goes well for you. Wishing you all the best.