Hi bohemian,
the community on the Science for ME forum were very interested in the NICE guideline development process. The forum's press release (see below) might give you an idea about how many people with ME/CFS feel about the guideline. In short, it is a huge advance on the old guideline. It has quite a lot of greyness about whether CBT or exercise therapy is useful, but at least indicates that neither are curative treatments and sets out how the possible harm from these approaches can be reduced. The new guideline represents a compromise between what the evidence suggests and the level of change that the health organisations and clinicians would tolerate.
The challenge now is to use the change in the guidelines to get real improvements in the care of people with ME/CFS, both in the territories covered by the NICE guideline, and beyond. That's going to take determined and concerted action.
I'm sorry to hear that you have had such hard time, and hope things will be better for you.
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Science for ME press release: New NICE guideline creates hope for change at last
The National Institute for Health and Care Excellence (NICE) has today, Friday 29 October 2021, published the guideline for Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. This follows a two month pause to publication in response to concerns expressed about some aspects of the guideline by several medical professional organisations. A roundtable meeting was held by NICE on 18 October to better understand these concerns and make clear the soundness of the development process and resulting guideline recommendations. Following this meeting, NICE Chief Executive Professor Gillian Leng stated NICE is "now confident that the guideline can be effectively implemented across the system". Science for ME, an online forum for people with ME/CFS, clinicians, and researchers, has welcomed the much-anticipated publication, calling it a paradigm shift in the care of people with this debilitating condition.
The guideline replaces the existing clinical guideline published in 2007 and aims to improve awareness and understanding about ME/CFS, provide guidance on when to suspect it to enable earlier diagnosis, and includes recommendations on access to care, symptom management and care planning.
NICE staff and the members of the guideline committee have worked for over three years to carefully examine the evidence. Science for ME commended their efforts and the resulting guideline, saying, "we believe it will lead to significant improvements in the care and support for the estimated 250,000 people in England and Wales with ME/CFS. The new guidance on diagnosis and management is particularly timely, as many people are developing the key symptoms of ME/CFS after Covid-19 infection. The guideline is a publication of international significance, providing an example of good practice that will influence ME/CFS care around the world."
The guideline makes it clear that graded exercise therapy (GET) should no longer be offered to people with ME/CFS, and that both cognitive behavioural therapy (CBT) and therapies based on physical activity are not curative. This is based on a review of the evidence, which rated the outcomes for studies of these interventions all of low or very low quality. This is a welcome and significant, evidence based change in approach from the 2007 ME/CFS guideline, in which CBT and GET were central to treatment.
It is clear from the findings of the evidence review that neither CBT nor physical activity (or exercise) programmes are effective in treating or managing ME/CFS or its symptoms. Such therapies have also been widely criticised due to their potential to cause deterioration in people with ME/CFS. It will therefore be concerning to many that the guideline includes these therapies at all, albeit in a more limited way than before.
Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London, said:
"I think the committee have reached an admirable synthesis in a very difficult situation. There is a need to preserve and extend specialist facilities for people with ME/CFS, making use of the experience of dedicated health care professionals, but there is also a need for a clean break with treatment protocols not supported by evidence and based on discredited theory. If future training of health care professionals genuinely follows the spirit of the guideline then a lot may be achieved. The break from theory-driven care needs to be real, however, not simply replacing a discredited theory such as deconditioning with another equally unsupported."
Recommendations focused on people with severe ME/CFS, who may be bed-bound, hypersensitive to light and sound, and in some cases require tube-feeding, should lead to significant improvements in awareness and access to care. Severely affected members of the Science for ME forum have welcomed this specific guidance with enormous relief, suggesting it will help them with engaging with social services, accessing both care at home and hospital care, and will make every aspect of life easier.
The guideline includes a recommendation on awareness of the prejudice, stigma and disbelief people with ME/CFS may have experienced and the impact this may have had. This is an essential inclusion, particularly in light of the current lack of knowledge and understanding of ME/CFS among health and social care professionals.
Science for ME has commented:
"We believe the guideline provides a detailed blueprint for the provision of more respectful and supportive care of people with ME/CFS, even though there are currently no treatments for the disease itself. But it will take a concerted effort to implement it. Better training and awareness should see an end to inappropriate assessments under mental health legislation and child safeguarding proceedings. We hope that clinical commissioning groups will review this guideline carefully and work with patient representative organisations to provide better, guideline-compliant medical services for people with ME/CFS, who have been poorly served for so long."