Towards the end of October 2021, after months of back and forth, the National Institute for Health and Care Excellence (NICE) finally published the Myalgic Encephalomyelitis (M.E) guideline that had been promised some time ago. The updated guideline clearly states that M.E is a physiological condition, not the psychosomatic laziness as previously thought, and that there is currently no known cure. While some biochemical mechanisms have been suggested in medical journals, no scientific consensus has been reached on what exactly causes the disease. As for treatments, the guideline mentions that while Cognitive Behavioural Therapy (CBT) is a useful tool for adapting to living with the chronic illness, it should never be offered as a curative treatment. Perhaps most controversial of all, NICE state that Graded Exercise Therapies (GET) should never be used in patients with M.E, and that any forms of activity management should only be offered to patients once the risk of becoming sicker is explained to them, with the caveat that the patient absolutely has the right to decline to participate.
Many people like myself welcomed the new guideline with open arms, although given that I have already suffered the consequences of GET and CBT, there was a certain bitter-sweetness that this has come too late to save me from harm. There were quite a few medical professionals who relished the updated guidelines, and some who had been on the fence were happy to accept clarification from the experts. Unfortunately, the few people responsible for the delays in the guideline’s publication in the first place have been very vocal about the decision to publish the document. Most of them were psychiatrists, physiotherapists, and M.E “specialists” (although how you can be a specialist in a disease where the pathogenesis remains unknown beats me) who have been administering CBT and GET with reckless abandon and complete disregard for their patient’s safety. If patients complained of worsening symptoms, they were at best deemed to be mentally ill, and at worst accused of lying and laziness. One doctor even tried to claim that in eleven years of leading a paediatric M.E clinic he had never once received a complaint, which is frankly impossible unless the guy is a super-efficient robot; we all screw up sometimes. The complacency is baffling, but also quite dangerous.
One of my biggest concerns about the new guideline is that it is simply not strict enough, and already I am being proven right. Many patients have taken to social media with screenshots of NHS webpages where GET has simply been rebranded as Graded Activity Management, and emails from clinics stating that their previous treatment programs still fit within the remit of the new guideline and therefore would not be changing.
Since the guideline only applies to M.E, there is also a significant loophole for those who believe in the power of “just walk it off” to exploit; these harmful treatments can still be offered to patients who do not have a diagnosis, or have a non-M.E diagnosis such as Ehlers Danlos Syndrome, Fibromyalgia, or even just Chronic Fatigue. Given the emergence of long-COVID, a condition I am now convinced is one and the same with M.E given the eerily similar development and symptoms, I cannot help worrying that sufferers of long-COVID are still going to be subjected to the same harmful treatments.
The sorry truth of the matter is that those who are adamant in the efficacy and safety of GET and CBT in M.E patients will never change their mind no matter the evidence placed before them. The quality of the evidence on which they made up their mind is incredibly poor, as I have previously discussed, so I have no faith in their ability to critically assess information. Indeed, not all doctors are scientists, in sense that they apply what is already known rather than discovering new things. They have more than enough to learn during medical school without having to get to grips with the incredibly complex principles behind the collection and understanding of scientific data as well. It is not their job to decide which treatments are safe and effective enough to offer on a national scale, just as it is not my job to decide which treatment an individual is prescribed. An expert committee made up of doctors and scientists have collaborated to produce this guideline, and that guideline needs to be accepted as such. GET and CBT must be left behind. It is not enough to simply rebrand what we currently do; we must ditch it for good.