Naughty or NICE.

A red heart and ECG heartbeat on a black and white background showing a stethoscope and medical documentation.

The National Institute for Health and Care Excellence is a government-funded body that oversees the NHS in the UK, monitoring research, informing public health policies, and ensuring that the treatments offered to patients are safe and cost-effective. Unfortunately, NICE have garnered a nasty reputation for fixating on one thing and one thing only; money. Every so often they will make headlines for turning down a life-saving treatment due to it’s cost, usually without offering a cheaper equivalent, thus leaving patients without proper treatment.

Sadly, NICE aren’t always known for following the recommendations of scientists and researchers either. During the final year of my nutrition degree NICE authorised a public health policy recommending that people only consume half the amount of sugar compared to previous policies; it was impossible to achieve for even the most diligent experts. The unrealistic target would put people off since there was no point even trying, and because of this the policy had been advised against by many top nutrition experts including my lecturers. They were ignored and the new recommendation was released to much controversy.

More recently, with the rise of long-COVID, NICE have been reviewing the treatments currently recommended for patients with Myalgic Encephalomyelitis. Current guidelines recommend two “cures”; Cognitive Behavioural Therapy and Graded Exercise Therapy. In fairness, CBT can provide a useful tool for people to adapt to sudden changes in their health and fitness, but it is at best a coping mechanism, not a cure. On the other hand, GET is downright dangerous.

The thinking behind GET is that by gradually increasing activity levels, patients will learn to tolerate more and more activity until they return to full health. This might work for someone recovering from an injury, but not for a chronic illness whose defining feature is an adverse physical reaction to even the mildest exertion. The entire principle of GET is routed in the false idea that M.E is simply a lack of fitness despite patients often being physically fit prior to falling ill, and is deemed to be either laziness or a psychological aversion to being active. However, upon its publication the PACE trial seemed to show that it was effective for patients with M.E, therefore it was recommended.

As its use became more widespread patients quickly reported a worsening of symptoms, myself included. Prior to GET I didn’t need to use a wheelchair at all and could walk quite far provided I could rest afterwards. Three months later I needed a wheelchair just to leave the house. Despite this GET continued to be recommended, and patients like myself were shamed for not trying hard enough. Even when the PACE trial was heavily criticised by experts as an excellent example of how not to do research, it’s use continued. Why? It’s cheap.

More recently, the NICE review of M.E treatments has been a disaster from the very beginning. The vast majority of the clinicians contributing to the review have heavily advocated for the use of GET and CBT despite the overwhelming amount of evidence that they harm patients and that M.E is not psychosomatic laziness. The one doctor who can actually evaluate evidence, Dr Charles Sherpherd, was forcibly stood down from the reviewing committee, and the patient group were told off for “abusing” the medics by pleading not to be subjected to harmful therapies. No thought was given to the decades of medical gaslighting and abuse M.E patients have been subjected to.

Even sharing my experiences online has opened me up to torrents of abuse; I’ve been told I couldn’t possibly understand the principles of scientific research despite that being my literal job, that I’m lazy despite having a full-time job and a side gig as an activist, and that it’s all in my head despite medication for dodgy neurones improving my symptoms significantly. I understand that I am biased against a therapy that caused me harm but I am also the average, not an anomaly.

My biggest fear is that, in the unlikely event that NICE do change their guidelines to stop the use of GET, their recommendations will simply be ignored by clinicians who want to do what they’ve always done. Guidelines are not laws and patients still being recommended GET will not be of any concern to NICE; they will have done their duty.

If you have long-COVID or have recently been diagnosed with M.E, I can only use my tiny platform to encourage you not to participate in GET no matter how much you are gas-lit, coerced, or threatened. I would not make such a bold claim if I did not have the experience and knowledge to back it up; despite all I’ve said I still have a deep respect for the medical profession. Unfortunately, they don’t have the same respect for those who spend their entire life dealing with the outcome of their misguided decisions. I, among millions, learnt that the hard way.

You can find more information about M.E, GET, the PACE trial, and the recent review of M.E treatments at the M.E Association.

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