Coronavirus and M.E./CFS
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M.E. and Long Covid

Long Covid is the term used to refer to “signs and symptoms that develop during or following an infection consistent with Covid-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis.”

This description, taken from the National Institute for Health and Care Excellence (NICE) guideline scope (see below) published on 30 October 2020, is the one used by NHS England.

There are some striking similarities between the symptoms of long Covid and the symptoms of M.E./ CFS. So far, there is no evidence to suggest that they are the same thing. We must be careful about drawing assumptions that drive care and treatment. What we are seeing with long Covid is that some people recover relatively quickly, some appear to have a delayed recovery and others seem to have no recovery or get worse.

At the same time, it is concerning to see that long Covid, like M.E., is being labelled as Medically Unexplained Symptoms (ie. a term used to describe symptoms that don’t have a physical cause). We believe this is wrong. From many, many years of experience, the M.E. community knows what helps with managing post-exertional malaise – pacing and rest and NOT recommending that people push through it.

There is a real opportunity for research which could help people with long Covid and people with post-viral conditions like M.E. We have the potential opportunity to understand what’s delaying or preventing recovery and what is restoring health. Our job is to ensure that this opportunity is not lost, that the neglect of people with M.E. stops and that we finally see the investment in research, treatments and care that every single adult and child with M.E. and their families deserve.

Our CEO Sonya Chowdhury spoke about this on BBC Radio Bristol in November 2020, appearing on the John Darvall show. She commented: “A lot can be learned by looking at post-viral illness like long Covid. We must use this opportunity to secure more research into M.E. as well as long Covid.”


NICE guideline

On Friday 18 December 2020, NICE published its COVID-19 rapid guideline: managing the long-term effects of COVID-19.

Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP), it “makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.”

Along with other stakeholders, Action for M.E. submitted a written response to the consultation on this guideline - also see below - which ran from Friday 23 to Tuesday 27 October.

We are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid, despite the fact that there is clear evidence that many people with M.E./CFS developed it following viral infection.

Those who experience M.E./CFS symptoms need specific care and management, such as pacing. If those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms.

As this guideline claims to be a living document, we would expect there to be a further consultation and review in due course.


Our response to NICE in full

General: It is disappointing to see no mention of the likelihood of developing Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) following infection. Research has shown that many people with M.E./CFS developed it from infection. Those who experience M.E./CFS symptoms need specific care and management, such as pacing. If those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, stay within this guideline then they may experience a worsening of symptoms and harm from the further tests, 'treatment options' and disbelief. We acknowledge the need for a rapid guideline. However you have removed the patient voice from the process by developing the guideline without clear input and within public view. If this 5 day consultation was conducted in public, although it is such a short time frame you would still have received a wealth of patient experience and knowledge which cannot be found elsewhere. As this is a living document we would expect there to be a further consultation and then review once this guideline is out in the public domain.

Recommendation 2.7: This should state the likelihood of the person going on to develop M.E./CFS. Draft guideline in development GID-NG10091 states that M.E./CFS should be suspected if a person has had symptoms for 6 weeks in adults. These symptoms can include the post-exertional malaise, fatigue and shortness of breath mentioned under 2.7. Denying people a diagnosis of M.E./CFS can lead to harmful methods of rehabilitation or management which go against best evidence. Studies have shown that M.E./CFS is associated with pandemic influenza infection.

Recommendation 3.4: For those with post-exertional malaise an exercise intolerance test can worsen symptoms, sometimes for a considerable period of time. If there are different sub-groups of people with long-Covid, as referenced in the guideline, then extra care needs to be given to ensure that any such examination is not harmful.

Recommendation 4.1: Patients should be given further information on shared decision making and patient choice. It must be clear that they can stop treatment/management at any point should they wish without it effecting the support on offer. The recommendations here feel deliberately vague which can open up patients to dangerous and harmful treatments through the interpretation on the ground. There needs to be more clarity on what should NOT be offered to people experiencing post-exertional malaise, such as graded exercise therapy.

Recommendation 5.1: The phrase 'realistic goals' gives the impression that for every person they should be aiming to increase activity and ability and push themselves to achieve this. For many they need to understand that they need to stop and wait for an improvement before trying to do more. 'Pacing' should be an encouraged technique whereby a patient plans their daily activity levels to stay within an 'energy envelope' which is the limit they can achieve before symptoms are exacerbated.

Recommendation 5.3: The current recommendation indicates that a return to work can be instant. It needs to be clear that this should only be attempted when physically able to do so without worsening symptoms.

Recommendation 5.4: This gives the impression that a form of CBT based on deconditioning would be helpful to people experiencing post-Covid illnesses. This can be harmful to those experiencing post-exertional malaise and also emphasises the disbelief and misunderstanding into their condition. This is why it is essential that those fitting the diagnostic criteria for M.E./CFS are referred to the relevant guideline.

Recommendation 5.5: Remove rehabilitation and put in stabilisation. Not everyone will be moving towards a plan with increased activity. It is important for people to stop and listen to their body and understand that going beyond what they are able to can have a worsening impact on the condition.

Recommendation 5.6: Add deterioration. Not every patient will experience a recovery at any one time and expectations need to be set. Tracking a deterioration of symptoms can identify whether some activity of management techniques are having a harmful affect on health.

Case definition: There needs to be an acknowledgement that some people will go on to develop M.E./CFS following infection. By eliminating those who fit the diagnostic criteria for M.E./CFS you remove the risk of harmful and damaging management techniques. You also allow those patients the chance to understand more about the condition they have and what they need to do to manage it.