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Doctors and People with ME

Many ME patients, at least those who are still being treated by a doctor, have often commented on how doctors do not understand the disease.
This itself compromises the future prospects for a patient to receive anything approaching adequate care.

The reasons for this may be that doctors receive no training on ME - either during medical school due to the flawed and sparse contigency in the medical curriculum for ME - or later during their career where there is little on offer.

Medical education about the realities of ME is essentially missing - with what is on offer being either inadequate or incompatible with the true requirement to understand this disease and be aware of what can make patients worse.

Doctors also may have been constrained by the NICE guidelines in what they feel they are able to offer.

NICE guidelines for ME are currently being re-written yet the attitude of those managing this augurs badly for a truly positive outcome.

The Director of Guidelines development (in correspondence with Invest in ME Research) incomprehensively declined to accept Invest in ME Research's demands for CBT and GET to be removed immediately from the existing guidelines, despite seemingly acknowledging how harmful these approaches can be.

Recent correspondence that Invest in ME Research initiated with the current NICE guidelines director similarly shows any lack of regard for patients.

There are also doctors who clearly remain ideologically challenged by this disease and continue to harbour false views about ME, fed by a Biopsychosocial (BPS) influenced healthcare system.
Despite NICE's statements that patients should decide their treatment we often see what occurs in practice - where ignorance replaces empathy.
And it is strange that this has been happening for decades and still occurs.

Of course, this is not just a problem in UK. We know this is happening in Europe - especially in those countries where ME is not even recognised. Working with our European ME Alliance colleagues we are trying to change this.

Above all, doctors seem to have lost any ability to say "I do not know what is wrong" - as though stating this would be seen as a shortcoming.
So much easier to assign a diagnosis of the spurious Functional Neurological Disorder (FND).

If only doctors would say "I do not know what is wrong but I will work with you to find answers".
If only patients had been believed.

Much of this can be traced back to negligent policies from governments, health departments, research councils and clinical care organisations, and research funding bias that discourages biomedical research into ME.

Despite this there have been signs of light coming through as more education and more research, funded by organisations like Invest in ME Research, changes the barren landscape that has existed in the UK healthcare system.

Invest in ME Research has, for fifteen years, been arranging cpd-accredited conferences for professionals in London and the participation of doctors has been gradually increasing. Yet there remains a great deal to do.

Invest in ME Research are working with Quadram Institute and the new clinical trial has already started - having been fully funded by the charity and its supporters.
Also we are trying new ideas to combine development of clinical expertise by participating in research into ME, as well as developing the research base click here.

The charity has also faciliated the formation of the European ME Clinicans group (EMECC) to encourage clinicians with expertise in treating people with ME to work together. There are good and knowledgeable clinicians around - EMECCincludes Professor Sommerfelt in Norway, Dr Julin in Sweden, Dr Mehlsen in Denmark and others in Europe. Meetings of EMECC have already been taking place and had the covid-19 pandemic not paused all activitis then more progress would have been made.
We will begin again once the pandemic begins to be resolved.

There have been doctors who thought for themselves and listen to their patients.

And there have been pioneers in treating people with ME.

Two such doctors were Dr John Richardson and Dr Irving Spurr.

Dr John Richardson had a distinguished career as a physician and published numerous papers.

He was a founder member of the Newcastle Research Group in which he was very active and the primary organiser of their annual international conferences. He was also a member of the Melvin Ramsey society and the Environmental Medicine Association as well as other medical research organisations.

Following his retirement from the NHS, he continued to see patients privately on a voluntary basis regularly seeing in excess of thirty per day. Many travelled considerable distances from the UK and abroad for his specialist advice and treatment and frequently got referred by hospitals and their own doctors.

More on Dr John Richardson at this link - click here.

Dr Irving Spurr was a GP in the rural Weardale Practice in County Durham for 28 years until his retirement in 1997.

He was committed to doing his very best for his patients and this led him to become a pioneering researcher into ME.

During the early Eighties, a boy of 14 came to see him with all the symptoms. Irving wanted to get to the bottom of what was causing it, but ME was, at the time, belittled in NHS circles as not a ‘real’ condition (some would say little has changed).

He became heavily involved in the fledgling John Richardson Research Group, a medical charity in the north-east of England, ultimately leading its work to promote greater understanding and awareness, as well as more effective treatment.

His commitment included running ME clinics, with his nurse wife Eileen at his side, but it was extended to delivering lectures all around the country and building links with colleagues in Norway, Canada and Israel.

He continued with the clinics until the onset of the ill-health that preceded his peaceful death.

In recent years his view on ME — once a lonely one — increasingly become mainstream, to the benefit of many sufferers from this disease. Yet he never let his crusade for ME cause him to short-change his other patients. (*)

* adapted from comment by Dr Spurr's son, Alexander Spurr

The John Richardson Research Group made a wonderful donation to Invest in ME Research to continue to establish a national and international centre for ME and translational medicine in this area.
More details here.

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