Wouldn’t It Be Nice…

To have proper funding and research into ME/CFS

Doctor with stethoscope

UPDATE: NICE Makes Last Minute Announcement (17th August 2021)

The updated guideline on the diagnosis and management of ME/CFS was originally due for publication in April 2021 but it was delayed until the expected publication date of the 18th August 2021. In a last minute announcement, NICE has today decided to ‘pause publication’ of the guideline, with no hint as to when it might now be updated. Read the statement from NICE here.

For further updates (since 17th August 2021), please see my newer article here.

(Author’s narration)

You fall ill. You see the doctor. You have tests. You’re given a diagnosis. Then you’re given the appropriate advice, treatment and/or medications and you start to feel better again. This is the pathway we would hope to follow when we fall ill. But, sadly, when you fall ill with ME/CFS the pathway is not this straightforward.

Firstly, there is currently no definitive test for ME/CFS. You’re diagnosed with ME/CFS when other conditions have been ruled out. Secondly, because the disease has not been properly researched and is poorly understood, there is no proper advice or treatment. Patients are essentially left floundering, despite ME/CFS being ‘a relatively common illness’ with roughly 40 patients per 10,000 estimated to have ME/CFS (NICE Clinical Guideline CG53 – Published: 22 August 2007). Worryingly, the numbers of patients with ME/CFS are likely to see a sharp rise in the light of Long Covid; patients who have been unwell with Long Covid for four months or more, are likely to be given a subsequent diagnosis of ME/CFS.

NICE Guideline for ME/CFS: Clinical Guideline CG53

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management

NICE (National Institute for Health and Care Excellence) was founded in April 1999. The organisation aims to lead to care that is high quality and good value and it looks to provide evidence-based guidance for clinicians. When diagnosing and treating patients, healthcare professionals may refer to the NICE Clinical Guidelines to see what recommendations and treatments are available for specific conditions. So, if your GP suspects you have a particular illness or condition, they may well refer to the NICE Clinical Guideline on the condition to review the diagnosis criteria and see what the recommendations are for your treatment. But what happens when you have an illness, like ME/CFS, that cannot be accurately tested for and has not yet been properly researched and understood?

The Introduction to Clinical Guideline CG53 states that:

CFS/ME… can cause profound, prolonged illness and disability, which has a substantial impact on people with CFS/ME and their carers. Uncertainties about diagnosis and management, and a lack of clinical guidance for healthcare professionals, have exacerbated this impact.

NICE Clinical Guideline CG53 – Published: 22 August 2007

This isn’t very reassuring reading, for patients or medical practitioners alike…

Furthermore, Guideline CG53 was published in August 2007, fourteen years ago, and is, in fact, currently under review. The updated version was due for publication in April 2021, but has been delayed until the (expected publication date) 18th August 2021, which is another issue in itself. According to NICE.org, NICE Clinical Guidelines are ‘updated as needed so that recommendations take into account important new information’ but, it seems, the update process can be slow and what happens to patient care in the meantime?

Graded Exercise Therapy Versus Stop, Rest, Pace

If you visit NICE.org, you will see there is currently (July 2021) a warning triangle under Clinical Guideline CG53 with the following explanation:

NICE is aware of concerns about Graded Exercise Therapy (GET) and is updating the current recommendations.

Overview: NICE Clinical Guideline CG53

When I joined the ME/CFS Community online, in early 2021, the first (and loudest!) message I received was how essential it is to Stop, Rest, Pace. The ME/CFS Community shared this message with people with ME/CFS, and extended it outwards to those people who were falling ill with Long Covid. There were posts warning people with ME/CFS and Long Covid against doing Graded Exercise Therapy, as many people with ME/CFS had found this harmful and their symptoms had worsened, pushing them from mild to moderate, or even moderate to severe. In July 2020, NICE had given a Statement about Graded Exercise Therapy in the context of COVID-19:

NICE is aware of concerns about Graded Exercise Therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19…

NICE Statement about Graded Exercise Therapy in the context of COVID-19

Reading about the bad experiences of other people with ME/CFS who had taken part in Graded Exercise Therapy made me reflect on how fortunate I’d been in falling ill when life was on hold for everyone due to Covid-19. I fell ill in October 2019, received a quick diagnosis (in February 2020) thanks to a caring and clued-up GP, and then waited until August 2020 for my video appointment with the specialist (which was delayed due to Covid-19). I spent this time resting at home and I was not offered the chance to take part in a ‘rehabilitation programme’, as would normally happen.

When the time came for my assessment with the specialist, ten months into my illness, I was advised to ‘(increase) both physical and intellectual demands with a graded incremental approach over the coming months’. Without the usual ‘rehabilitation programme’ to guide me, I simply followed my intuition. At the time, I was completely unaware of Guideline CG53 and the fact the recommendations held within it were under review. Purely by chance, I had been able to rest at the beginning of my illness and, so far, my symptoms are classed as being ‘mild’.

Interestingly Guideline CG53 acknowledges:

People with CFS/ME have reported pacing to be helpful in self-managing CFS/ME. However, healthcare professionals should advise people with CFS/ME that, at present, there is insufficient research evidence on the benefits or harm of pacing.

NICE Clinical Guideline CG53 – Published: 22 August 2007

Without proper research and understanding of ME/CFS we do not have any official answers on how best to manage the condition, but I trust the instincts and experiences of the patients themselves (including listening to my own instincts) to guide me on my journey through this illness. To me, the message from the ME/CFS Community to Stop, Rest, Pace seems like a sensible mantra to live by.

Cognitive Behavioural Therapy

The specialist also recommended I follow the guidance in ‘Overcoming Chronic Fatigue: A Self-Help Guide Using Cognitive Behavioural Techniques’ by Mary Burgess and Trudie Chalder (a book which I read, thought about, and then threw in the bin!). As well as Graded Exercise Therapy, Guideline CG53 recommends Cognitive Behavioural Therapy (CBT) as a treatment for people with (mild or moderate) ME/CFS but, again, this is not something which resonates within the ME/CFS Community. There is a feeling that this psychological approach to treating the illness is somewhat dismissive of the physical symptoms that people with ME/CFS experience. The Nice Guidelines state that:

…the use of CBT does not assume or imply that symptoms are psychological or ‘made-up’

NICE Clinical Guideline CG53 – Published: 22 August 2007

But imagine if you were ill with a cold virus or a stomach bug, being advised to try CBT might not feel like the best use of your time and energy in an attempt to recover. Positive thought definitely has its place and can be incredibly useful; but I, for one, am yet to be convinced that it is an effective strategy in reducing the physical symptoms of ME/CFS. I fell ill with a virus and something in my body broke. I felt a distinct physical change occur and, as science doesn’t yet have the answers, I am doubtful of finding the answers in a CBT self-help book.

The Draft Updated Guideline

On the 10th of November 2020 a draft updated guideline on the diagnosis and management of ME/CFS was published. The draft guideline updates the recommendations for both Graded Exercise Therapy and Cognitive Behavioural Therapy and it also looks to reduce the diagnosis time to three months of persistent symptoms, rather than four. NICE acknowledges that:

Because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits… 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… The draft guideline also emphasises that Cognitive Behavioural Therapy (CBT) is not a treatment or cure for ME/CFS.

NICE Draft Guidance

So this sounds like good news for the future. Dr Paul Chrisp, Director of the Centre for Guidelines at NICE commented:

…much of the distress surrounding (ME/CFS) is caused by difficulties in recognising, acknowledging and accepting the condition and its impact. This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of Graded Exercise Therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them.

NICE Draft Guidance

Hopes for the Future

So I eagerly await the publication of the updated guideline on 18th August 2021 and share the hope of Dr Paul Chrisp, that the new Draft Guideline:

…will provide much needed clarity, set new standards for health professionals and ensure that people with ME/CFS have access to the right care and support.

NICE Draft Guidance

But, despite the progress that is hopefully being made, wouldn’t it be nice if there was also more funding and research invested in ME/CFS? The NICE Clinical Guideline for the condition could then be based on wide-ranging, high quality evidence, so that doctors and patients alike could be confident in the treatments on offer and, perhaps, we could even move towards finding a cure. With the number of ME/CFS patients likely to swell, with those who are receiving a diagnosis after falling ill with Long Covid, the need for this research and investment is more important than ever.

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