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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr D G Smith

Jenny

Senior Member
Messages
1,388
Location
Dorset
Unless they're using the correct criteria - the Canadian ones or the newer, updated Clinical Concensus ones, they are not diagnosing ME.
And these criteria are not officially recognised in the uk, (yet. Scotland is trying to get them put into use.)

Most of the docs I've seen recently use the Canadian Consensus criteria. In the 1980s, when I was first ill (and before these criteria were developed), the docs I saw referred to Melvin Ramsey's definition which is similar. I've just remembered that I first realised I had ME after reading a newspaper article that David Smith wrote in 1985! When I saw him he was referring to Ramsey's work.

(And of course the term 'chronic fatigue syndrome' was rarely used then, if at all, and when it was it seemed to be referring to something quite different.)
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
That sounds like progress!

The NICE guidelines do not support the Canadian Criteria, or recommend its use.
Are the doctors you're seeing working for the NHS?
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
That sounds like progress!

The NICE guidelines do not support the Canadian Criteria, or recommend its use.
Are the doctors you're seeing working for the NHS?

Over the last 8 years or so I think I've seen about 8 NHS docs (some specialists and some GPs), 3 private docs and 3 private complementary therapists. Most of the NHS docs I've seen think the NICE guidelines are worthless and have been prepared to do a range of tests and try a range of treatments that I've suggested.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
That's absolutely brilliant! I'm really pleased for you. :hug:
In fact, that's far better news than I've ever read here about the situation in the uk.
(I'm in Scotland and I'm just left to rot by my gp. No help at all, beyond antidepressant prescribing.)
 
Messages
64
Hello, I came across this thread on goolge when I was researching different treatments.
Naomi, I am really happy for your progress, I have read your story on the following link,
http://www.me-cfs-treatment.com/wp-content/uploads/2013/03/Getting-Better-from-CFS-ME.pdf
I presume you must be the very same Naomi as even the dance class is the same story you have posted here.
I wonder about the case at the very bottom of the page though, that of Rose. Her husband fell ill and she took on too much, as we are all guilty of at times, then she was told there was nothing more that can be done for her. Surely this is when we need the help and support of a doctor the most. The condition is so limited that we can all go too far if we feel a little better, but to be told there is nothing to be done because of it seems somewhat odd.