NICE takes a dim view of foreign research into ME/CFS | Robin Ellis Freedom of Information request | 24 October 2016

October 24, 2016

Story by Tony Britton

The main supplier of England’s drugs and treatment guidelines, the National Institute for Health and Care Excellence (NICE), tends not to take foreign research into account when it produces work on ME/CFS.

In internal correspondence released this month under the Freedom of Information Act (FoI), the agency admitted that it has not yet considered the results of important US studies when deciding what is best for British M.E. patients.

NICE are holding back the review of their guidelines on ME/CFS until some time in 2017, saying the evidence to justify earlier reconsideration isn’t strong enough.

“It is not really for the NHS to respond to a report commissioned in another country and not yet examined by its commissioner”, the agency’s director for clinical practice wrote to colleagues as they were assembling their reply to a FoI request from Robin Ellis.

Professor Mark Baker wrote: “We would take seriously the views of the relevant esteemed medical associations in the UK, principally the RCP (Royal College of Physicians) and the RCPsych,(Royal College of Psychiatrists) when looking at reviewing this guidance.

“I am not aware of any reason to do anything before then unless some major new evidence on treatment emerges, and we know that no major studies are in progress”.

The applicant, Mr Ellis, filed three FoI requests earlier this year seeking the release of information held by NICE about the PACE Trial.

This time he wanted to know if NICE allowed its thinking on M.E. to be influenced by overseas research using easily observable symptoms – like testing for post-exertional fatigue using the 48-hour exercise test – the 2015 US Institute of Medicine report on the “devastating severity” of M.E – and the National Institutes of Health report which “retired” the Oxford criteria for CFS believing it to be harmful to people with the illness.

Mr Ellis also pointed to another US agency that had recently determined that CBT and GET were ineffective treatments given the poor outcomes reported all round – including in the PACE Trial.

Mr Ellis’s latest FoI request was formally entitled: Unique characteristics of pw ME/CFS as defined by the CCC and ICC and exercise physiologist experts eg Workwell Foundation, Snell, VanNess, Stevens, Klimas. He wanted to see what papers were held by NICE on these matters.

In the papers released by NICE, there is an intervention from the Countess of Mar, who chairs the Forward ME Group of charities.

The Countess wrote to NICE:

“I have to assume that you must agree that patients with ME/CFS are very much the same wherever they are in the world, and that there will be no difference between UK and US patients.

“I also assume that you must agree that very many more resources have been applied to this issue in the US than in the UK. Professor Baker reiterated his belief that there is no evidence that GET makes some patients worse.

“Absence of evidence is no evidence of absence, and there is plenty of evidence from the two major charities in the UK – Action for ME and the ME Association – which have both done major surveys of their members…”

Professor Baker replied to her that NICE will conduct a critique of the American work to consider “whether it adds anything to what we already know”.

He added: “You will be aware that the British academic establishment holds an entirely different view, though not necessarily any better informed.”

On October 19, Mr Ellis formally requested an internal review of NICE’s handling of his FoI request. “I asked for information around the decision NOT to update the NICE Guidelines, none was provided.”

The full exchange of correspondence can be read here:

The papers released can be read here:

The papers have been slightly redacted by NICE. The agency wrote that it did not want to show details of junior staff involved in the correspondence nor of “a third party” who was consulted as part of the exercise.

7 thoughts on “NICE takes a dim view of foreign research into ME/CFS | Robin Ellis Freedom of Information request | 24 October 2016”

  1. This is truly shocking.
    The arrogance on display here is breathtaking.
    It’s now clear (to me at least) that next year’s guideline review will deliver nothing of benefit to patients and the Norwegian Rituximab results will be ignored.

    Having bullied their way out of the Judicial Review of CG53, the message that NICE continues to send out is really troubling.

    1. Yes, it’s very clear from this that on ME/CFS, NICE condones willful medical ignorance and negligence.
      When are they going to start recommending removing insulin treatment and promoting increased consumption of sticky buns and cakes for type-1 diabetes?

  2. I think we can be fairly certain that NICE would take a different view if the majority of foreign evidence coincided with the entrenched view of the medical profession here in the UK. We had a family saying to use when we wanted an end to an argument and knew we were losing–“I’m not deaf, I’m just ignoring you.”

  3. Background information:

    MEA and Forward ME Group initiatives to try and get the 2007 NICE guideline on ME/CFS revised

    MEA submission to NICE:

    Forward ME Group meeting with Professor Mark Baker from NICE:

    Forward ME Group meeting with Dr Martin McShane from NHS England:
    Like · Reply · Message · 1 · 4 hrs

  4. Guttered to read this, but also really fed up. It almost feels like there is a conspiracy towards people with M.E but if I said that, the psychiatrists would say ‘there you go, its her mind, she has issues’. So what now M.E Association, where do we go from here?

  5. ‘ Dr. Nancy Klimas also said in an interview in the Miamy Herald 2009:

    “I’ve had patients who met posttraumatic stress disorder criteria, where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.”‘……..
    ………..’ With a diagnosis follows treatment guidelines. Guidelines that are specific in that particular disease. If you get an incorrect diagnose it will automatically lead to malpractice. You will not only be exposed to a treatment that will give you nothing – it also means that the disease never diagnosed is completely untreated and therefore at risk to deteriorate. But there is a much higher risk that the improper treatment leads to deterioration. When doctors deny that ME/CFS exists, recommend treatment based on incorrectly established diagnosis or denying proper treatment due to lack of knowledge – it is not only a serious risk of deterioration of the disease but also a risk of patients developing secondary mental illness.’

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