The new ME/CFS NICE Guideline Draft for consultation (2020) represents a major reversal in advice for clinicians: “The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS.”
The Draft clearly instructs: “Do not offer people with ME/CFS:
• any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy, structured activity, or exercise programmes that are based on deconditioning as the cause of ME/CFS
Patients have repeatedly reported being harmed by GET. Back in 2002 the Chief Medical Officer’s (CMO’s) Working Group recognised that “substantial concerns exist regarding the potential for harm” in respect of graded exercise, and that patient reports “clearly indicate that the York review results do not reflect the full spectrum of patients’ experience.” Countess of Mar (Chairman Forward-ME) 2020 to the Dept. of Health
The NICE Guideline (2007 – 21) ignored those concerns and recommended GET and CBT, claiming they were the treatments with the greatest evidence of effectiveness. This resulted in CBT and GET becoming the standard treatment provided by the NHS CFS/ME clinics. The rationale for this approach was the erroneously belief that patients pay too much attention to their symptoms, are afraid of activity/exercise and become deconditioned.
The standard treatment for deconditioning is GET – as was made clear in the old NICE Guideline: “People with mild or moderate CFS/ME should be offered GET that includes planned increases in the duration of physical activity. The intensity should then be increased when appropriate, leading to aerobic exercise (that is, exercise that increases the pulse rate)”.
Tragically, that advice failed to take into account the cardinal symptom of ME/CFS – PEM or post exertional exacerbation of symptoms. It ignored the fact that by definition, patients with ME/CFS are made more ill by aerobic exercise! This has been unequivocally and repeatedly demonstrated by several research groups and confirmed by major govt. bodies in the US: the National Institutes of Health, the Center for Disease Control and the National Academy of Medicine. The pathology underlying ME/CFS patients’ intolerance of exertion is less clear, but involves a number of physiological abnormalities, including impaired energy generation.
For decades patients have reported that they were being harmed by exercise programmes such as GET, and they were ignored. It has taken a long time for research to clearly demonstrate that they were right and must be listened to.
Severely ill patients carefully analysed the PACE Trial research used to justify GET and CBT as treatments. They vividly exposed its flaws, but it took many years of denigration before scientists deigned to listen and recognise that their analyses were accurate. See many articles by David Tuller https://www.virology.ws/mecfs/
A major question remains: How is the suffering and probably permanent harm and disability caused to many thousands of patients over several decades, by incorrect harmful advice and GET and CBT ‘treatments’, to be redressed?