Chronic Fatigue Study

[Cooper27]

I came across this, and thought some of our members diagnosed with chronic fatigue might be interested in signing up:

theguardian.com/society/202...

I think it would be helpful for those who think they've been misdiagnosed with CFS instead of thyroid issues to sign up too. At the end of the day, they need to understand the umbrella that is a CFS diagnosis if they are to find a root cause.

[tattybogle]

This looks good.

They look to be using an algorithm based on the better 'case definitions' ie. the Canadian Concensus, and Intitute of Medicine. And are not using Oxford or NICE.

That's a good start.

And they state that biopsychosocial researchers are NOT involved. and that all researchers involved are focused on biomedical research.

That's even better.

I can see one potential difficulty where Thyroid+CFS/ME patient's are concerned.

Depending on which diagnostic criteria you use, a co-existing fatigue-ing condition that has not been adequately treated would exclude someone from having an ME/CFS diagnosis.

So if you had confirmed Thyroid problem AND possible CFS/ME there may be a huge difference of opinion over whether your thyroid disease has been adequately treated!

I have put a link to the FAQ's page on the study website.

decodeme.org.uk/faqs/

I think this study does look encouraging.

[Cooper27 in reply to tattybogle]

I think it will be interesting. The friend who shared this with me has been officially diagnosed with CFS but she is also hypothyroid and still trying to identify the right medication dose. I hope it won't exclude her, but maybe if it does it might be a wake-up call for her GP (there was laughing in my head when I wrote that, I'm far too cynical )

[Mistydeb01]

I signed up to this the other day ( I found it on a Lyme forum) it does look encouraging that someone is looking into it. I hope it is taken seriously by the heads of the health service once it’s done. Once you get a diagnosis there’s no help or advice from doctors to help you get better. It’s like they don’t want to know about complex symptoms and no inclination to get to the root of the problem to help. It’s a minefield you have to walk alone and without the brainpower to actually understand/ digest/ remember properly what you read. It’s like a rollercoaster ride you can’t get off.