MPs back bid to overhaul approach to ME and chronic fatigue syndrome sufferers

Ministers have faced fresh pressure to overhaul their approach to people with ME and chronic fatigue syndrome.

Senior Tories Nicky Morgan and Justine Greening were among the MPs to support a Commons motion which called for increased funding for biomedical research for the diagnosis and treatment of ME (myalgic encephalomyelitis) and updated training of GPs and other medical professionals.

It also raised concerns over therapies offered as treatment and “unjustified” child protection procedures being launched against ME families.

The motion, which is non-binding, was approved following a short Commons debate in which MPs revealed the difficulties and suffering faced by people with the illness.

Former education secretary Ms Greening (pictured) said: “I think the key to this has to be research so that we start to understand this terrible disease and then from that be able to build proper treatments that actually have a chance of working.”

Mrs Morgan, also a Tory former education secretary, added there is a need for more specialists with knowledge of the condition.

She said: “Not only are our constituents and those sufferers fighting a condition that makes them feel terrible, but then they’re not believed when they say what they are going through and that must compound the difficulties of the condition.

“So having a GP who only believes you but then wants to help and to understand would make a huge difference, as with other health professionals.”

Mrs Morgan added: “We wouldn’t allow this for any other condition whereby people are struggling to even be heard, to have their voice heard, for the Nice guidance to take so long to be delivered.

“There are many, many examples, it is time for the Government to respond.”

Labour MP Stephen Pound (Ealing North) said attitudes had to change, particularly around the idea that ME is caused by sleep deprivation, explaining how people with ME could sleep all night and still be exhausted.

“It is not something that can be satisfied or slaked by sleep, we have to change attitudes,” he said.

“I’d like to say to all those people out there suffering with ME or chronic fatigue syndrome, all those people who have been ignored and belittled and insulted, that this House recognises the reality of your condition, this House will not sit idly by while you suffer, this House will not ignore you.”

Plaid Cymru MP Ben Lake (Ceredigion) said about 250,000 people had ME, more than two other well-known neurological conditions, Multiple Sclerosis and Parkinson’s Disease, combined, and an economic cost of £3.3 billion.

Calling for an urgent increase in funding, he said: “One would imagine these considerations alone are sufficient to ensure adequate funding for biomedical research into ME and clinical care for those suffering the disease.

“Yet ME research represents just 0.02% of all active grants given by UK mainstream funding agencies.

“It really does beggar belief that research into an affliction that leaves a quarter of sufferers house or bed-bound and from which 95% of people do not recover receives so little funding.”

Health Minister Steve Brine said the Government “do not for one minute underestimate” the condition, which he said has a “devastating impact”.

But he defended the medical profession, saying ME is extremely hard to diagnose, and said he had asked if Professor Helen Stokes-Lampard, chair of the Royal College of GPs, would be willing to come to Parliament and speak to MPs about how doctors deal with the issues.

Mr Brine thanked MPs for raising the issue, adding: “We remain fully committed to delivering significant investment in our research programmes infrastructure, but we need people to come forward with those quality research proposals.”

Copyright (c) Press Association Ltd. 2019, All Rights Reserved. Picture (c) Ben Birchall / PA Wire.