In July, 2025, the following paper, “Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care,” was published on Science Direct.
This paper, from a group of health researchers at various universities, relates to fibromyalgia. However, it includes some critical comments about the way in which the MEA highlights very poor recovery rates as an important reason for raising money to carry out biomedical research into finding the cause/s of ME/CFS along with safe and effective forms of treatment that are targeted at the underlying disease process. We make no apologies for doing so and we do not agree that proving accurate information about poor recovery rates for ME/CFS inhibits patient recovery.
The paper states that the money we raise for research is ‘almost exclusively' spent on pharmaceutical research. This is not correct. The vast majority of our research funding is spent on research relating to diagnostic biomarkers, causative factors – including post mortem research – and all the basic running costs of the ME Biobank. We do occasionally fund clinical trials into drug treatment, including the current LDN trial. But this only represents a very small proportion of our research expenditure over the years.
Extract
In order to secure donations, patient charities and affiliated researchers emphasise that conditions such as fibromyalgia have no cure (see Pathirana et al., 2017). Donations fund (almost exclusively) pharmaceutical research so that “one day we hope we might discover a diagnostic marker and effective treatments” (The ME Association, 2024). It therefore makes sense for such organisations to assert that “getting better” or “recovering” from fibromyalgia is rare, and that chronicity is the more probable trajectory (Shepherd, 2021):
The paper also refers to complaints that we have made to the Advertising Standards Authority about products and treatment programmes that claim they can result in recovery – even where this action leads to withdrawal of NHS support. Again, we make no apologies for doing so.
Extract relating to the Chrysalis Effect
Our illustrative example centres on a complaint, brought by two parties including the ME Association, to the UK's Advertising Standards Agency (ASA) about a “supported recovery programme” (Ruling on The Chrysalis Effect Ruling on The Chrysalis Effect Ltd, 2023).
Both the ME Association and The Chrysalis Effect (a not-for-profit organisation and a PACFiND study site (de-anonymised with permission) support people with Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and fibromyalgia, due to their overlapping symptoms. The ME Association's complaint centred on The Chrysalis Effect's use of the term “recovery” in relation to their programme.
The ASA complaint was upheld in September 2023, with the ASA determining that the service “should hold scientific evidence in support of the claims that their programme could aid the recovery” (preferably “trials conducted on people”) (ibid.).
This followed an earlier, unsuccessful complaint brought by the ME Association. At the time of data collection for this study, an NHS pilot version of the “recovery programme” was underway, and poised for expansion.
However, the ASA ruling led NHS commissioners to demand substantial changes to the programme (e.g., removing references to “recovery”) that its developers considered too undermining of the programme (as well as costly and onerous to implement). At the time of writing, the developers have withdrawn the programme for NHS patients.
The ASA's determination (that there was not enough trial evidence to support claims about recovery) is hooked into a dominant biomedical infrastructure, in which clinical trial evidence is the gold standard. Within these governing systems, biopsychosocial (and often locally-developed) services find it difficult to demonstrate benefit (i.e., that healing work works).
As one service developer commented, clinical trials are often not the best tool to demonstrate the usefulness of complex interventions, and therefore there is little such gold standard literature available to justify their programme:
Any evidence that we send in [responses to the ASA] is not accepted because the evidence that they measure it against is the existing literature. [But] the existing literature, everything that has been published on research for chronic fatigue and ME and fibromyalgia, is based on the biomedical acute disease model. [Service developer, Chrysalis Effect]
A fully updated version of the MEA information leaflet covering Prognosis, Permanency and Quality of Life will be published shortly.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
