Testing for Myalgic Encephalomyelitis

Testing for M.E., version 2. Features an alternate ending and vastly improved sound quality.

Category:

Nonprofits & Activism

Tags:

• Myalgic
• Encephalomyelitis
• CFS
• CFIDS
• Encephalopathy
• ME/CFS
• CFS/ME
• severe
• testing
• tests
• research
• medical
• scientific
• Jodi
• Bassett
• Hummingbird

[brisbanette]

Why is it that myself and everyone else I know with the diagnosis of CFS/ME and Fibromyalgia have NEVER EVER had an MRI??? Let alone any neuropsychological or neurological testing? I apparantely have both Fibro and CFS. I had tons of blood tests and x-rays (as all of us would have) but never any brain scans or tests. How can we all be diagnosed with these incurable diseases when we haven't even been tested for MS?!?! Ridiculous.

[AHummingbirdsGuide]

@brisbanette When the definition of 'CFS' is strictly followed, anyone with any serious abnormalities on testing NO LONGER QUALIFIES for the diagnosis. That is so crazy too...sigh. ('CFS' is never anyone's correct diagnosis BTW.) No room for basic logic or science in healthcare these days it seems.

[Macmador]

Thank you very much for all your broadcasts, which I have enjoyed. I live in the UK where M.E. treatment could not be funnier if Monty Python had staged it. There's no cure, but knowledge is always power, and your shared information helps reinforce the case for a serious application of medical science & tech in the study of these strange and awful afflictions. Best - John

[AHummingbirdsGuide]

Yeah, its so crazy how we are treated, would be funny if it wasn't so tragic, it's so illogical and idiotic and everyone is being so GULLIBLE! Sigh:) Thanks, knowledge is power I agree!:)

[neelubird]

This is all true but then how do we get through to the thick skulls of the NHS and DWP?

[AHummingbirdsGuide]

Activism. It is why we need so many to participate in uncompromising ME activims...but it's a catch 22 and most are too ill or unwilling to do this, so we get nowhere fast. Sigh. Stage 1 is having testing info and at least we have that now thanks to Hyde etc. Stage 2 is getting this info more widely known accepted....even harder:( Sigh!

[randalbond]

I'm a memeber of a ME online forum, and just today we were discussing a SPEC scan as a possible diagnostic method. Soembody mentioned that it's mentioned on Hummingbird's website. I don't suspect that we can do it on NHS.I wonder if you coudl direct us to how to do it privately. I understand that it's a avery expensive test, and only few of us can afford it. Still, it woudl be very helpful to know it anybody in the UK with knowledge of ME is doing it. Thanks for your advice.

[Xurgonic]

@brisbanette I exhibit many of the symptoms of ME, have been diagnosed with CFS and dysautonomia 14 years after symptoms began. But an MRI was the first test performed and had two more over the years, yet all the results are said to be normal.

[MollyMate1]

Are there any ME charities that could fund this sort of treatment for those worst affected?