The controversy surrounding NICE guidelines for diagnosis and management of M.E/CFS

In November 2020, The National Institute for Health and Care Excellence published a draft guideline for the diagnosis and management of M.E/CFS. This came as a huge relief to sufferers of this illness who have been mistreated with ineffective treatments for over forty years.

Prior to the release of a new draft guideline by NICE, two options were available for the treatment and management of M.E/CFS. These are Graded Exercise Therapy and Cognitive Behavioural Therapy, both of these options are highly controversial in the M.E Community due to the negative impact they have had on thousands of M.E patients.

Graded Exercise Therapy

Graded exercise therapy (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. The basic idea involves finding out what you can already do comfortably, then increasing the length of time you exercise and the intensity gradually. This sounds effective for M.E patients as it works on the basis of tailoring the gradual increase in activity to your symptoms and capabilities. However, surveys of patients conducted by patient charities have universally found Graded Exercise Therapy to be harmful, although a minority of patients found it helped them or simply ineffective. A number of severely ill patients have reported that starting Graded Exercise Therapy will moderate symptoms cause a severe escalation of symptoms, leaving them permanently worse.

This is part of the reason as to why the removal of Graded Exercise Therapy as a treatment for M.E/CFS was deemed so important fot the M.E community. The draft guidelines produced by NICE in 2020 said that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) should not be offered for the treatment of ME/CFS. This was based on the overwhelming reports of the harm caused by this treatment for M.E patients.

Cognitive Behavioural Therapy

CBT is a talking treatment that is used to try and help patients manage CFS/ME by changing the way they think and behave. With aims such as acceptance of diagnosis, increased control over symptoms, challenging feelings that could prevent symptoms improving, and increasing understanding of how behaviour can affect the condition. Again, similar to Graded Exercise Therapy this treatment seems good in theory, however it places undue stress on the patient cultivating a culture of personal blame. Due to the focus on personal thoughts and feelings, if symptoms do not improve with the introduction of the therapy, blame is placed on the patient for being either uncooperative, or for not trying hard enough.

M.E is a condition that is NOT psychological, therefore the use of a psychology based therapy makes little sense, especially with the negative impact this therapy has on the majority of patients. Surveys from patient organizations have found considerable rates of harm from CBT among the patients surveyed.The largest UK patient charities, ME Association and Action for ME, have both called for the use of CBT to challenge "illness beliefs" to be withdrawn and for NHS staff to warn patients of the potential for harm. Following this the NICE draft guideline also emphasises that cognitive behavioural therapy (CBT) it is not a treatment or cure for ME/CFS.

So, what is the controversy now that NICE have addressed these issues?

As of the 17th of August 2021 NICE has taken the decision to pause publication of its updated

This last minute pause has been extremely frustrating for patients with M.E who after an extensive three year process which examined treatment in detail was conducted. It feels like a slap in the face to patients hoping for positive change in the treatment and management of their conditions. As someone who suffers with M.E myself, I am incredibly disappointed, frustrated and saddened by NICE's decision to pause the enforcement of the new guidelines, all of which have been collated and produced via an extensive pre-determined process of review. For the Royal Collages of Physicians and Paediatricians to throw a spanner in the works at this point, it is incredibly suspicious and concerning as a patient treated by these organisations. Why wait until a day before publication and enforcement to voice concerns?

The best M.E patients and their families can do now is to continue to hope and wait for positive change in treatment and management of the condition. If you would like to aid this plight, please sign this petition put together by ME Action, demanding the publication of the new guidelines regardless of the protests raised by the Royal Collages of Physicians and Paediatricians.

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