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Doctors and Patients with ME

Many ME patients, at least those who are still being treated by a doctor, often comment 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 flawed and sparse contigency in the medical curriculum for ME - or later during their career where there is little on offer.

Invest in ME Research has, for thirteen 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.

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 be constrained by NICE guidelines in what they feel they are able to offer. NICE guidelines are currently being reviewed yet the attitude of those managing this augurs badly for any 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.

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.

Above all doctors seem to have lost any ability to say "I don't know what is wrong" - as though this may be a shortcoming.
So much easier to assign a diagnosis of the spurious Functional Neurological Disorder (FND).

If only doctors would say "I don't know what is wrong but will work with you to find answers".
If only patients were 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.

And there are doctors who think for themselves and listen to their patients.

And there are 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 has 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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