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Now: Progressive relapsing (occasional sharp drops in wellness that are permanent; no remitting phase) I have been sick for just over 40 years and I have been through periods of each of these stages with the first stage lasting about 15 years. I believe experiencing PEM over and over and not...

Here's the thing. If you pay for a test from a commercial testing company on your own you don't have to have a physician order it. But, if insurance pays for the commercial company's test then the insurance company would require the physician order it. Who cares who orders it if the client pays...

Interesting. Did insurance pay for it or did you pay out of pocket?

(My bold.) I am thinking alternative practice MD's and chiropractors involved with nutrition counseling are using this service.

Yes. This forum seems to have more UK patients and MEAction is, being based in the US, taking on the problem of Afican Americans and other US minorities not even being considered by the health care system as candidates for an ME/CFS diagnosis.

The reality is African Americans, minorities, and those in a lower economic status in the US don't have health care equality and do not get a diagnosis for many diseases in a timely manner. If it is a disease like ME/CFS, then you don't get a diagnosis.

Yes, they often talked about burnout in reference to what we were suffering from. Let's not forget "Yuppie Flu" which was coined to infer that the Yuppies, Young Urban Professionals (often white "preppies") were burning out.

I don't think so. I had an account and started using it right away.

Moderator note: This post and those responding to it have been merged with this thread to avoid two separate threads discussing the same research and responses to it. I am not on Twitter (it makes me way too angry) so could someone tweet this to as many of the BPS cabal as possible? I would...

Legislation overhauls Maryland medical network's board ABC News

Study: Researchers successfully treat babies with 'bubble boy' disease using gene therapy USA Today

I put the link to the PDF in the WayBack Machine.

International Classification of Diseases. I World Health Organization. 1969. pp. 158, (vol 2, pp. 173).

FYI - This is the 1969 WHO classification information. International Classification of Diseases. I World Health Organization. 1969. pp. 158, (vol 2, pp. 173).

Well, ME isn't rare as arguably there are more than a million worldwide that meet the ICC and now there is ME/CFS so I guess they figure they won't have a page anymore. But, it was another resource people could go to and they also referenced the 1969 WHO classification as a neurological disease...

NORD removed its ME page. If you do type in Myalgic Encephalomyelitis, only a list of patient organizations pops up.

They've gotten away with everything else.

If this announcement were made in the US the ME/CFS researchers would be able to submit their proposals in no time. It actually concerns me if there are no researchers in the UK able to do this at the drop of a hat.

Look, what I believe you are stating is that patients should know they have OI but, when you are mild with ME/CFS you don't know you have OI and can't even put it into words and you end up finding a new normal. You can have OI without ME/CFS, but I didn't have it until I did have ME/CFS. Even...

No, I didn't. I got my sitdown job and found my new normal. I had no idea it was due to being unwell or connected to my having mono and since it was 1979 there was no CFS. I never said anything to my doctor about it and went on with life working, socializing, and so on never understanding I had...