Trial By Error: More Debate About Treatment of Severe ME/CFS

By David Tuller, DrPH

Last month, Jonathan Edwards, an emeritus professor of medicine at University College London and an advocate for patients with ME/CFS, published a statement on a pre-print server about managing the nutritional needs of patients with severe disease. (I wrote about it here.) A few days ago, a group of parents and carers released an open response to Professor Edwards’ statement, acknowledging his efforts to improve matters but also questioning some aspects—in particular, his argument about how much is or is not known overall regarding care for ME/CFS patients.

The context for both statements is the series of horrifying accounts in England of teenage girls and young women diagnosed with ME (or CFS or ME/CFS) who have experienced, and in some cases are continuing to experience, traumatic and harmful hospital stays. (That is not meant to suggest that males cannot also be subject to such trauma, but the currently publicized cases involve females.) These situations are marked by profound conflicts between hospital personnel on the one side and patients, carers, and the experts advising them on the other.

In the case of Maeve Boothby O’Neill, who died three years ago at 27 after three hospitalizations failed to resolve her life-threatening issues, the coroner in Exeter will hold a two-week inquest beginning on July 22. The pre-inquest hearings have already shed light on the UK National Health Service’s inability or unwillingness to handle these situations in a medically appropriate and effective  manner. Hopefully the inquest will reveal much more about what went wrong, and why.

After I wrote about Professor Edwards’ statement on Virology Blog, the ME Association highlighted my post and added a comment from medical director Charles Shepherd. Here’s part of what he wrote:

“I have been closely involved with several of these distressing cases. So, I was very pleased when Jonathan Edwards decided that further expert guidance was required and asked for input on the production of a protocol for hospital management of severe ME/CFS that would build on what is already in the NICE guideline and enlarge on nutritional assessment and support.

“I hope that doctors and other health professionals will now follow both the NICE guideline recommendations and this very comprehensive protocol when they have a patient with severe ME/CFS who requires nutritional support – as they may be at risk from life threatening malnutrition if this is not forthcoming.”

(Side note: Professor Edwards argues that his document is really not a “comprehensive protocol” or even a protocol at all, but simply a review of what’s already out there, combined with some suggestions. However, I think his document could qualify as a “protocol” in a broader, looser understanding of that word.)

Major disagreements in these situations have focused on nutritional challenges and the various possibilities for tube-feeding as an alternative to eating, with families demanding such alternatives and hospitals generally resistant. This resistance is often grounded in false and offensive beliefs, promoted by the biopsychosocial cabal, that ME/CFS is driven by psychological and psychiatric disturbances, not underlying pathophysiological causes. Professor Edwards’ statement was an attempt to ensure that these patients don’t starve—literally–while being cared for in medical settings or at home.

A few such ongoing cases have received significant publicity and have been highlighted in particular by the Chronic Collaboration, an online site or feed that bills itself as “a resistance movement for chronically ill & disabled people.” A few days ago, the BBC published a story about patient Carla Naoum that starts like this: “A man says he is terrified his daughter will die in hospital due to what he says are failures in care by NHS staff.”

The article continues:

“Pierre Naoum, 62, from Feltham in Hounslow, west London, says his daughter Carla, 23, who was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is in severe pain and now weighs about 5st 9lbs (35kg) – down from 8st 3lbs (52kg) -after being admitted to West Middlesex Hospital due to problems with her feeding tube.

“Even though there are no ME/CFS specialists at West Middlesex University Hospital (WMUH) in Isleworth, west London, Mr Naoum says a psychiatrist assigned to oversee her care has insisted on removing accommodations for her condition such as reduced light, has suddenly reduced her opioid dosage to nothing, and told them she needs to ‘calm down.’”

This sort of coverage itself marks a significant change from just a few years back in the ongoing environment for patients. At that earlier point, British journalists writing anything about this illness would inevitably quote at least one of the major biopsychosocial grandees and charlatans espousing their inevitable bullshit–Professor Sir Simon Wessely, Professor Michael Sharpe, Professor Trudie Chalder, etc. That era seems to be passing. This shift in journalistic approach is a small grace amid the ongoing medical catastrophes.

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Parents and carers respond to Professor Edwards

In his statement, Professor Edwards was advocating for what he called a “pragmatic” approach to preventing the worst outcomes in these dire cases. He made clear that he considers much of the current science in the field to be insufficient or inadequate for clinical decision-making. The response from the group of parents and carers acknowledges the value of Professor Edwards’ efforts. But the authors also take exception to his views about the evidence base for some of the available approaches for treatment and management of symptoms—or rather, his views about the lack of a reliable evidence base.

Out of caution, the statement does not list any specific authors. As Sarah Boothby, Maeve’s Boothby O’Neill’s mother, explained in a direct message: “Anonymity is the only way families can feel safe in the UK for as long as social services (local government) are unprepared to defend children and disabled adults from systemic NHS neglect of everyone with severe & very severe ME…What happened to Maeve and me in the last nine months of her life is being replicated all over the UK every day.”

One passionate advocate whose family is not subject to any such repercussions from the NHS is Janet Dafoe, from the San Francisco Bay Area; her son, Whitney, has severe ME. Dafoe praised the statement on X (formerly known as Twitter), noting: “I was part of writing this letter and I endorse it wholeheartedly…There are treatments that are used that can really help the various symptoms.” Dafoe’s husband, renowned Stanford geneticist Ron Davis, is a prominent ME/CFS researcher.

Among the references cited in the patient and carer response is a 2021 publication from Mayo Clinic Proceedings by a group of the leading ME/CFS experts in the US. The paper recommends some of the management strategies, such as saline infusions, that Professor Edwards, for his part, does not believe are based on robust evidence. (Not being a clinician or a research biologist, I do not plan to try to adjudicate such differences here.)

Here are some key paragraphs from the response from parents and carers:

“We are a group of parents and carers of people with Severe Myalgic Encephalomyelitis (ME).  The ages of our loved ones range from mid-teens to 70s. Many of those we care for have  experienced hospital care in the UK or are at risk of an emergency admission due to  challenges maintaining adequate nutrition and hydration at home. Group members share strikingly similar experiences. We have read Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 (Edwards,  2024), henceforth referred to as ‘the paper’, with interest and welcome the pragmatic  approach in seeking to improve care for those suffering from life-threatening complications  due to ME. We are offering this response as a constructive contribution… 

“Whilst we welcome the paper’s recommendations, our group suggests several additional factors not included in the preprint, which we see as critical to the analysis of the issues highlighted. This includes the need to acknowledge the growing body of scientific and clinical evidence explaining the underlying pathology in patients with Severe ME. We believe this to be critical to countering the misinformation and bias that often influences clinical and managerial decision-making about patients with this condition…

“As carers, we strongly believe that the onus should be on acknowledging what is now known and knowable. This alone would strongly refute the notion of a need for a middle ground and would instead focus attention on the need to generate solutions from both evidence-based practice and practice-based evidence for managing symptoms, not only in relation to nutritional failure, but also (but not limited to): orthostatic intolerance, dysautonomia, hypovolemia, autoimmunity, sleep disorders, fluid balance, gastroparesis, mast cell activation, and pain.”