Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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RichieD 07/03/2015

There is yet another investigative report by a federal agency. This one echoes the recent IOM report in calling for a better response to the threat imposed by ME/CFS.

I found it encouraging, it adds weight to the push to get relief for us and invalidates these ridiculous theories that we're all just crazy or suffering from a variety of undiagnosed ailments.

The report makes specific recommendations for dealing with ME/CFS and gives the disease the serious concern that's long overdue.

Here's the link to a review of the report...

http://www.cortjohnson.org/blog/2015/07/03/a-pathway-to-progress-the-final-p2p-report-on-chronic-fatigue-syndrome-highlights-needs/

Lupin1 07/03/2015

This is good news. Thanks for sharing. I wish the UK would take a similar approach. Here, it's all graded exercise (ie torture) and CBT (ie telling you that you're a nutter and should just get on with it). It's even listed as a mental illness in the guidelines.

cmiat 07/03/2015

A mental illness??? Unbelievable! At least here in Australia they call it an immune system disorder. Even 20 years ago I was only told it was a mental illness by the uninformed.

RichieD 07/04/2015

They don't come right out and say it's a mental illness here, but I think most of the doctors in my area believe that it is. All I seem to get out them is smirks and pointless testing that pumps up the bottom line on the bills they send me.

I've given up hope of getting any kind of help from the local medical establishment. Most of them claim they've never heard of ME/CFS. I believe the technical term for that is "cock and bull story". "No money in it" would be closer to the truth than "never heard of it".

Lupin1 07/04/2015

That's awful Richie. A lot of people in this country end up much worse after medical treatment because the NHS think they know how to treat it...as cheaply as possible.

VickiB 07/12/2015

I've been very lucky to have doctors who believe CFS is real. They just have no idea how to treat it. I was seen by a leading researcher at NJ Medical School. With his help, I got into a good place as far as meds and treatment. It was confirmed by Anthony Kamaroff MD. at Harvard. He's listed as one of the members of the board or something.

I've had a hard time with several specialists who tell me they are not treating me for CFS. I point out that if I had a heart condition he/she would have to take that into consideration.

Fortunately, the doctors in the Breast Cancer Center are wonderful. I'll have the same surgeon I had before.

What happened to Ampligen? Was that ever approved? Is it still SEID?

featherjack 07/14/2015

I'm convinced my doc doesn't believe in ME/CFS. He says he takes my symptoms seriously, but my blood work is "fine", so he stops at that. The first year he told me to "keep working with your therapist".

Yes, I know; I have to get a new doc. Thanks for the heads-up and link, Richie.

featherjack 07/14/2015

A link from the bottom of Richie's report review takes us to http://www.cortjohnson.org/blog/2015/06/26/is-mecfs-stuck/
where Alan Gurwitt, M.D. discusses where we now stand w/r/t *federal health entities and offers suggestions on how to move forward. FYI...

RichieD 07/14/2015

Thanks for pointing out that link, Jack...I just read it. It's depressing, but probably true. Fauci has ignored us for a long time, and he will likely continue to do so.

They did the same thing with AIDS, it took people marching in the streets to change that. The CDC said it was "non-fatal" and not worth looking into seriously. Politicians won't help us until we find a way to kick their butts.

featherjack 07/16/2015

Not too likely that we could turn out much of a 'crowd' of CFSers to march, is it? lol...

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