Rapid Response to Anti-NICE Whine de Coeur; UK Government Seeks Input to Interim Delivery Plan for ME/CFS

By David Tuller, DrPH

The Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) has finally published a cogent rapid response to its recent whine de coeur from the PACE authors and their cronies. In the commentary, the co-authors criticized eight purported “anomalies” they believe occurred during the process of developing the 2021 ME/CFS guideline from Britain’s National Institute for Health and Care Excellence (NICE). Although a number of rapid responses are known to have been sent, this is the first one JNNP has decided to share

More accurately, it’s the first except for the rapid response from MEAction UK that was shared by JNNP–and then quickly un-shared. (I wrote about that here.) In a statement, the journal attributed the decision to disappear the rapid response to “inappropriate inflammatory language” that had apparently not been inflammatory enough to prevent the initial posting. At least TheBMJ.com ran a news item about the commentary–JNNP is one of the journals under the BMJ publishing umbrella—and then published a response to the news report from Dr Charles Shepherd, medical advisor to the ME Association.

The rapid response posted by JNNP is from Dom Salisbury, who identifies himself as “an independent patient researcher,” with Robert Saunders and Professor Jonathan Edwards acknowledged as “contributors.” Here’s the opening:

“There are several shortcomings in the commentary by White et al. For brevity, this response focuses on four main points.

1. New case definition
In the past 20 years, multiple case definitions have been published that require post-exertional malaise (PEM) as a core feature of ME/CFS, such as the Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC), and the Institute of Medicine (IOM) criteria. NICE’s definition is based on the latter.

These case definitions are the ones used in research and clinical practice today. White et al. refer to the 1994 criteria developed by the Centers for Disease Control and Prevention (CDC) but the CDC no longer seems to use this case definition. Instead, they advise healthcare providers to diagnose ME/CFS using the IOM criteria where PEM is a required symptom.

NICE evaluated scientific evidence for ME/CFS as it is currently defined and not for a case definition that was published nearly 30 years ago. Other reviews on ME/CFS, such as the recent one by IQWIG in Germany, have used a similar approach. (1)

It is incorrect to state that NICE “downgraded nearly thirty years of research.” The previous NICE guidance from 2007 on ME/CFS already highlighted PEM as a core feature of ME/CFS, and studies that used this description were not downgraded in the evidence review. Neither were studies that used the CCC, ICC, or IOM criteria mentioned above…”

You can read the rest here:


The UK government’s open consultation for its “interim delivery plan” for ME/CFS

On August 9th, three UK government agencies–the Department of Health and Social Care, the Department for Education and the Department for Work and Pensions—jointly released a document called “My full reality: the interim delivery plan on ME/CFS.” Here’s the executive summary:

“This cross-government interim delivery plan on ME/CFS has been developed in close consultation with the ME/CFS community and other key stakeholders responsible for service delivery. By bringing together many key organisations at national level and people with personal experience, we have a unique opportunity to tackle the challenges facing those living with ME/CFS and their families and carers.

“The interim delivery plan was developed around 3 key themes: research, attitudes and education, and living with ME/CFS. The latter theme was then further sub-divided into topics covering children and young people, social care, health, welfare, employment and quality of life. Working groups were formed for each theme and workshops focusing on the ‘Living with ME/CFS’ topics were held to gather more evidence and views.”  

In releasing this proposal, the agencies called for a period of public consultation ending October 4th in order to “inform the development of a final cross-government delivery plan on ME/CFS.” The plan appeared to take into account many of the concerns long raised by patients and advocates concerning poor treatment from the medical establishment and difficulties in accessing decent treatment and care. It received quick praise from Action For ME, which called it “a positive step forward” and “an excellent start” while adding that “much more is needed.”

The interim plan received some high-profile coverage in The Times, which slugged the article with the following headline: “NHS [National Health Service] told to stop blaming ME patients for being ill and improve care.” As part of the Times coverage, reporter Sean O’Neill recounted the 2021 death of his daughter, Maeve Boothby O’Neill, from complications related to ME:

“My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness. I wanted her to try exercise programmes (then recommended as a treatment) and wondered what trauma had caused her condition. For too long I believed the medical orthodoxy, and that strained our family bond.”

(I wrote about Maeve’s life and death in April for codastory.com.)

Notwithstanding the regressive thinking represented in the recent JNNP article from those on the losing side of the NICE debate, responsible policy-makers in the UK’s public health establishment appear to be looking forward in a manner much more likely to be beneficial to patients. Perhaps the tide has turned—at least a bit.