Last week, the ME community was expecting the National Institute for Health and Care Excellence (NICE) in the UK to publish new guidelines for the treatment of people with ME/CFS. Based on the draft guidelines published in November 2020, it was anticipated that the guidelines would reverse its 2007 recommendation of graded exercise therapy and cognitive behavioral therapy as treatments of the disease.
Less than twelve hours before the scheduled publication of the final guidelines, NICE announced it was pausing publication for an unspecified amount of time. The reason? Push back from the UK organizations that continue to cling to these therapies despite the clear scientific evidence that they do not work.
I won’t recap all the details of the decision and the fallout. I recommend these excellent articles from David Tuller, Tuller and Steven Lubet, Valerie Eliot Smith, and #MEAction. Instead, I want to speak to the impact of NICE’s decision on people with ME.
People with ME were unanimously horrified by NICE’s insupportable change of plan. Some people immediately went into advocacy mode, both individually and collectively. For others, this pause in publication felt like a dangerous defeat.
The old NICE guidelines, which support GET and CBT, have undoubtedly caused harm to people with ME. Allowing those guidelines to stand for even one extra day–despite the clear evidence that they are harmful and do not work–represents a danger to people with ME. NICE’s cowardly capitulation to the groups with a vested interest in perpetuating the old guidelines is a direct attack on us, the people who will continue to be advised to take these harmful treatments. I understand why people may have felt despair, in addition to righteous anger.
Do not give in to that despair. Do not fear that the old NICE guidelines will stand forever. Do not feel like we will always be at the mercy of people who have been left behind by the science but still hold the microphone.
I have been an advocate for more than twenty years. In that time, I have seen the CDC abandon its longstanding recommendation for GET and CBT. So has the Agency for Healthcare Research and Quality in the United States. Many scientists have asked for an independent review of the PACE trial’s conclusion that GET and CBT work, despite what the data actually show. The National Academy of Medicine recognized that post-exertional malaise is a central feature of the disease (an outcome I personally did not expect).
The pause in NICE’s publication is a temporary setback, and it is evidence of how determined the psychosocial school is to maintain its status quo. We can and should oppose this pause and support immediate publication of the guidelines. We must provide public accountability if there is any interference in what NICE itself says was a rigorous process.
The tide will continue its turn. GET and CBT are on the way out because there is no scientific basis for continuing to use them.
Take care of yourself and each other during this upheaval. We will prevail. If you have capacity to speak out or support those who do, then please do. If you cannot, if you need a break or a rest, then please take care. Progress comes too slowly, and there are always setbacks. It is frustrating. We move forward, ever forward together.
The frustration mounts, even for those of us not subject to the immediate reach of the guidelines, as we see the science ignored by the people (I won’t call them scientists – and obviously they never were) who have a vested interest in pushing invalid treatments.
Some day there MAY be an accounting of whatever financial and academic ‘success’ rests on this garbage. Don’t hold your breath – the proponents have high social standing in their ‘fields.’ Their entire reputation rests on continuing to propose harmful treatments – and to call those who do not benefit from them, vulnerable sick patients, lazy and unmotivated.
Let that sink in.
thanks for sharing…Yes, the main diagnostic stat for my ME/ SEID/ CFS is post exertional malaise…providers have a difficult time accepting the energy limitations suffers experience.