Unless you have been enjoying a desert island island get-away with no wifi or phone coverage for the past few years and have either not seen any UK press and media, or any communications from M.E charities and advocacy groups, you will know that the National Institute of Care and Excellence (NICE) in the UK, have been working on reviewing their guidelines on M.E/C.F.S.

Their ‘draft’ review was published in November 2020 and we, and the M.E/C.F.S patient community (patients, charities, advocacy groups), were very happy to see that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) were no longer to be recommended as ‘treatments’.

The final publication was originally due a few months ago but had to be delayed due to the overwhelming response received by NICE to the draft review.

18th August

In 5 days time, we will know the outcome of this very long review process. Alongside M.E/C.F.S patients, we are counting down the seconds.

There are no words to explain how potentially harmful Graded Exercise Therapy is for M.E/C.F.S patients. We personally know a handful of M.E/C.F.S patients who now have PTSD as a result of this ‘therapy’. As a direct result of this ‘treatment’, they deteriorated from being ‘mildly’ affected to being bedbound for months. One of these patients saw footage shot within her CFS clinic on a TV programme recently and it triggered flashbacks and severe anxiety for days, obviously this additional stress also caused a bad M.E/C.F.S flare.

The history behind Graded Exercise Therapy as a result of the widely debunked PACE trial is covered at length within our e-training so we will not go into it here. However, we can sum it up with –

It was poor quality research and the results should never have been published, let alone adopted by Governments worldwide.

To assume that the final publication will lead to GET being widely scrapped and never be recommended to M.E/C.F.S patients in future is naïve. We have seen many UK medics state publicly that they believe NICE has simply given in to patient pressure and they will continue to advise patients to ‘increase their activity’ regardless of the outcome of the NICE review. These medics worry that patients are simply deconditioned.

M.E/C.F.S patients are not deconditioned. Being deconditioned is the least of their worries!

Of course there are no ‘reported harms’ from exercise, and specifically Graded Exercise Therapy,  as there is nowhere for M.E/C.F.S patients to report harms. Exercise/increased activity is not a drug and so has no regulatory body. We have previously raised this with the Department of Health and Social Care and Medicines and Healthcare products Regulatory Agency. We would suggest that, if the NICE guidelines are changed and no longer recommend exercise or increased activity, patients need somewhere official to report harms by those who are ignoring these guidelines.

Currently, M.E/C.F.S patients simply ‘drop out’ when they realise that the Physiotherapy sessions are causing an exacerbation of symptoms. Many patients have to say they are ‘better’ before they can ‘self-discharge’. This means Physiotherapists and other medical professionals, unless the patient complains officially, are unaware of any detrimental impact to the patient’s health. Given that Post Exertional Malaise causes exacerbated symptoms 24-72 hours after exertion, it is not unusual for medical professionals to be completely unaware of a symptoms flare caused by ‘increased activity’.

This is why anecdotal evidence is key in this area, patients know far better than any medical professionals about the damage increased activity/exercise, and specifically Graded Exercise Therapy can do to a M.E/C.F.S-affected body. When doing a household task like hoovering can cause a flare that leave you bedbound for a week, patients fully understand that walking for increased periods of time every day is not a ‘treatment’ or cure for M.E/C.F.S.  This is why we are so pleased that NICE have listened to patients experiences of GET in addition to reviewing good quality scientific literature on the PACE trial itself.

On a very basic level – M.E/C.F.S -affected bodies do not create or use energy as a ‘healthy’ human body does. This means patients are energy deficient. Why would anyone see exercise as a ‘cure’ or ‘treatment’ for sick people who have very limited energy? (Apart from as a cost-saving exercise).

In our view, the only people who will be recommending GET or ‘increased activity’ to M.E/C.F.S patients after 18th August, are those with a very poor knowledgebase on the disease and do not listen to their patients. So much has been written about the intolerance to activity in M.E/C.F.S patients, regardless of the review outcome, the negative implications should now be plain for all to see. We are hopeful that over time, as more and more healthcare professionals participate in our e-training and learn about the potential harms from GET, the narrative will change and proponents of GET for M.E/C.F.S will receive ‘guidance’ from their M.E/C.F.S – educated peers.

The resistance to the NICE review makes us wonder how powerful and eminent NICE actually is. We understand that these are merely ‘guidelines’ and it is for medical professionals to choose whether they adhere to them or not. It has also come to our intention that NICE will not be ensuring that the updated information is cascaded to all medical professionals. That task will be down to M.E/C.F.S organisations and patients on an individual basis.

18th August is just the beginning of potential progress, regardless of the review outcome, Stripy Lightbulb CIC will continue to highlight that ‘increased activity’, GET, ‘Graded Exercise’, or anything that sets ‘goals’ or exercise ‘targets’ are not M.E/C.F.S appropriate.

Tick tock.