The Real ME
I have been involved in a Midlands ME Support Group for many years. Two things in particular stick out in my mind and I’d like to share these with you.
First I was fortunate to get a chance to talk to an eminent doctor working on profiling the DNA of ME sufferers. He was giving the keynote speech at the AGM of one of the National ME Groups. During the course of this conversation I asked him “How confident are you that all the people you are testing really have full-blown ME?”
His response astounded me. He said that “Of all the people referred to my hospital for testing - less than half!” Now these people had been diagnosed by a GP or a Specialist and referred specifically for this trial. He went on to say “We admit all the referrals for a three day screening process to eliminate other possible explanations for their Chronic Fatigue”. Maybe, like me, you are shocked that so many of these professionals, doing the referring, had got it wrong. Then again maybe you are not so surprised!
Well it got me thinking: if less than half of those referred are actual ME sufferers, how does that reflect on other research findings in the ME field? In particular how many of the participants in the PACE trial would have passed the three day screening? All the more so since many of the PACE panels were self selecting against what, I believe, to be a very low criterion namely the Oxford. It is not my intention here to reopen the debate about the reliability and the creditability of PACE: but it is my intention to encourage a much better way of selecting the participants in future trials.
The second thing that stays with me is all the people who came to our Support Group who said something like “You don’t know how good it is to talk to somebody who actually understands ME; my GP doesn’t even believe ME exists”. Now this is actually another manifestation of the first problem I covered – namely the inability of many GPs to correctly identify ME. Could it be that it is has something to do with the low level of exposure the average GP has to people with ME? I believe the average GP has about 1500 patients on his/her books. Further statistics suggest that between a quarter and a half of one percent will have ME: ergo each GP can expect to encounter between 3 and 7 ME cases. Maybe it is not so surprising that all too often they seem to be poorly equipped to understand ME.
Further weight is given to this lack of clarity amongst GPs, by the experience of a fellow Trustee. He was a GP, who was appointed as the ME Specialist for his PCT area. He found a very significant number of the referrals to his clinic were not suffering from ME (Chronic Fatigue Syndrome) but were suffering from some other manifestation of Chronic Fatigue. Further he said that the quality of the referral letters and information given by the referring GPs was often poor and suggested a lack of confidence in diagnosis and understanding of ME 
As a Trustee of Resumecfs (the clue is in the last five letters!) I was very pleased when we embarked on two projects to address these issues.
  1. The expansion of a Disease Register specific to ME
  2. A GP Awareness Campaign.
The aim of the Disease Register is to provide a data bank of people, whose ME has been assessed against the highest criteria, willing to take part in future Research projects into ME. The plan is to supplement this further by creating a Biobank holding blood (and maybe later post-mortem tissue samples) of the participants in the Disease Register. These together should ensure quicker and much more reliable groups for research into ME.
The aim of the GP Awareness is to provide GPs with a check-sheet (developed by my colleague who was the GP ME specialist) which sufferers can complete and take to their GP as a basis for discussion on their symptoms. Allied to this is a set of basic Guidance Notes which might be of use to the sufferer and especially to his/her GP.
There is much more detail of this on our web site This covers, amongst a lot of other information;
  • The various criteria used to define ME,
  • An Application form to down load and send to offer yourself for inclusion on the Disease Register
  • The Symptoms check sheet for the GP Awareness and the Guidelines
Our chairman, Professor Derek Pheby gave a presentation on all this and for those with internet access this film is available on our web site. It is also available on YouTube (enter resumecfs) and indeed your ME Support Group should have a DVD copy in your library.

But if we are to make progress on these important fronts we need the active support and the engagement of People with ME – that probably means you. 

Sent to us by :- Alistair McLachlan



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November 2018
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