Behcet's Syndrome Society
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A letter to the Royal College of General Practitioners

Hello there everyone, I am making slow progress with my misdiagnosis project.

This evening I have written a letter to the Royal College of General Practitioners asking them to address the issue of clinical misdiagnosis in relation to Chronic Fatigue Syndrome.

The chairwoman of the RCGP is none other than Dr Clare Gerada and it just so happens that her husband is none other than Professor Sir Simon Wessely.

Professor Wessely is the psychiatrist who has lead and coordinated the spread of Chronic Fatigue Syndrome diagnosis across the NHS covering the last 20 years.

To address this issue I am going to campaign for one major change that can be made to address the issue of patients being misdiagnosed for 5, 10,or 20 years.

I am going to put a case forward that restricts the initial diagnosis of CFS to 12 or 18 months.

Should the treatment for CFS fail for that patient and if that patient has deteriorated over that fixed time then they should have an automatic right triggered so that they can receive a complete independent reassessment that includes considering rare diseases as possible alternative diagnoses.

Had this been available for me and for all those who have got in touch with me with terrible statements citing misdiagnoses that went on for 2 decades in some cases; I have no doubt that I'd not gone for 12 years with my own misdiagnosis.

The numbers of those who are living with a rare disease - misdiagnosed with Chronic Fatigue Syndrome must be significant.

This has been going on since the early 1990's when the diagnosis of CFS was introduced into the NHS at all levels from GP's upwards.

So thinking logically - there will have to be a total reassessment of patients presently diagnosed with CFS and especially so for those who have been given this diagnosis 5, 10 or 20 years ago.

I'll update you all again when I've had a reply from Dr Clare Gerada.

Best regards,


7 Replies

Well done you! As an inveterate cage rattler I will follow with interest.


You go for it! We are cheering you on:)


Well done! I wish there was more people like you in the world :-)


All the above and more!!!!!




And given the nepotism and cronyism in the system - Please make sure you copy in or complain to NHS England. The procedure would be to make a complaint under the NHS complaints procedure, complaints can be made directly to the provider of the service (in this case your local NHS Foundation Trust) or to the Commissioner (in this case your Clinical Commissioning Group (CCG) or both. Once a formal response has been received and the complainant is not satisfied, the next step is to take the matter to the Parliamentary and Health Service Ombudsman (PHSO) for a review. Good Luck!


Wow :o) Many thanks for your replies :o) It's not an easy task but I do have an excellent adviser to help me along the way.

I do not want to make my letter public yet as it's not good etiquette but I will put it up on my website when I've had a reply.

I'm also putting in Freedom of Information requests with the 5 key psychiatrists involved in CFS - none of whom are qualified to be able to correctly identify a rare disease yet free to make a CFS diagnosis on the basis of negative standard test results.

I'm also writing to NICE to ask them why they allow psychiatry to dominate CFS when NICE itself classify CFS as a diseases of the Central Nervous System and not a functional mental illness.

At this stage I am collecting evidence for the prosecution of a bigger plan to lodge a formal complaInt with the General Medical Council and the NHS itself.

I need as much supporting evidence as I can collect.

And slowly but surely I am collecting that evidence.

Once again - many thanks to everyone here who has sent me statements.

I wish I could go further afield to collect more but my health just won't allow me to.

Nevertheless I have been given three articles including two journal published research studies about this.

One study states that misdiagnosis of CFS can be as bad as 70%.

Until later,



Just a small update.... I decided that it was not good enough just to write to the chairwoman of the RCGP. As mentioned before, Dr Clare Gerada is the wife of Professor Sir Simon Wessely and he is the father of Chronic Fatigue Syndrome.

So, to overcome any possible conflicts of interest, I also wrote to the two vice chairmen, the Chief Executive and the President of the Royal College of General Practitioners.

Two of these people work outside of the London HQ.

The additional letters go off in the post today.

This is only the beginning. I have plenty more letters to write and Freedom of Information requests as well.

I maybe quiet for a while but if anyone has some useful ideas then by all means do get in touch.

I rejoined Facebook last week. I've had an offer from an Euler's Danlos Support Group to put out a request for more people to come forward who have been misdiagnosed with Chronic Fatigue Syndrome.

If anyone here could help put the word about I'd be really grateful.

Thanks, Stephen.


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