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Why This Guideline Change Is Good News for People With Myalgic Encephalomyelitis

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Anyone who has ME (myalgic encephalomyelitis) or lives with someone who has it will know that you cannot just “push through” the fatigue. The more you ignore the symptoms, the more you spiral towards relapse.

When I first fell ill with ME, I, like many others, tried to push on. I was far too ill to work but I tried to go for walks, even a swim (when you struggle to get dressed or wash your hair, you’ll see how ridiculous that was).

At some point over the first year, I realized how detrimental this was. My health was steadily declining and I was becoming even more trapped in my bed. Once I started to reduce my (already minimal) activity level and introduce frequent rests in my day, I began to find some stability and relief from the worst of the symptoms.

For over a decade, the NICE (National Institute for Health and Care Excellence) guideline for ME has advocated the use of Graded Exercise Therapy (GET) for the treatment of ME. Graded Exercise Therapy is based on the PACE trial which included flawed data and conflicts of interest amongst the investigators (namely their relationships with disability insurance companies). The PACE results have since been largely disproven but still NICE have kept them in their guidelines.

According to the NHS website: “GET is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity. It usually involves exercise that raises your heart rate, such as swimming or walking.”

This kind of advice makes my jaw drop so far it hits the floor. From experience, I know this is the worst possible advice for people who have ME. Before I fell ill, I hated to go a day without exercising. Having ME does not mean we are lazy and exercise-averse.

Unfortunately, NICE guidelines are seen as best practice for the medical profession in the UK to follow. Numerous patients with ME have been forced to do Graded Exercise Therapy resulting in much harm and in some cases, even hospitalization. Furthermore, the advocation of GET and also Cognitive Behavior Training (CBT) has only increased stigma within the medical profession and society that people with ME are responsible for our symptoms.

Which leads me to today — November, 10 2020 – when the UK ME community woke to the news that NICE had published a new draft guideline. Whilst the 72 pages need to be studied in detail before full conclusions can be drawn, the main headlines are clear:

1. Physical activity or exercise or GET should NOT be offered as a treatment or cure for ME.

2. CBT should not be offered as a treatment or cure for ME (but can be offered as support in managing the distress of a chronic illness if the patient wishes).

I, amongst many others, cannot believe this has finally happened. And it is only due to the tireless campaigning and work from ME charities and individuals to whom we will always be grateful.

We cannot help the individuals who have already suffered so much from the PACE trial and the NICE guidelines. But this is a huge step in the right direction. And hopefully it marks the start of change within medical profession. We already face so many battles with our symptoms. If we can finally have the support of doctors, that will be one less thing to fight.

It is important to note that this is still a draft guideline and it is vital it is seen through to fruition.

ME is a biological illness and it needs biological treatments and cures. With GET no longer on the NICE guidelines, there is hope on the horizon.

Getty image via digicomphoto

Originally published: November 11, 2020
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