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M.E., long Covid and getting the right support

September 10, 2020

Forward ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue. UPDATE An Early Day Motion for debate has now been tabled on this: scroll down for more, including a template you can use to ask your MP to support this.

Since the start of the outbreak there have been many voices in our community warning about the possibility of a spike in cases of M.E./CFS, following Covid-19 infection. A previous spike in post-viral fatigue was seen following the SARS outbreak (also a type of coronavirus).

Sonya Chowdhury, our Chief Executive, spoke about this back in June on BBC Points West:

“The ongoing exhaustion, and inability to return to previous activity, is something that has shocked many, including those who may have been asymptomatic or had relatively mild COVID, as they are now experiencing difficult and challenging symptoms."

Prof Paul Garner, Director of the Centre for Evidence Synthesis in Global Health at London School of Hygeine and Tropical Medicine, has been documenting his personal experience in the British Medical Journal. In his latest blog, he says:

"I believe there are thousands of people with long haul covid-19 who are overdoing it and making themselves ill with these relapses, across the whole spectrum of conditions. Many have fatigue, and overreaching causing relapse seems common [...] I agree we need research, but we urgently need guidance right now. The guidance should not be contingent on the research being completed. The guidance should be developed rapidly and updated in real time."

Action for M.E. and other charities have raised concerns about some of the newly-published guidance aimed at supporting people with long Covid, based on addressing "deconditioning" with graded exercise therapy (GET), despite the potential for long Covid to lead to post-viral fatigue, which may develop into M.E./CFS.

We are working as part of Forward ME to challenge such guidance wherever it appears, and highlight good practice. Led by Physios for M.E., the group has produced a joint open letter to support this. It says:

"Instead of the usual ‘reconditioning’, we recommend that these patients should be helped to adopt a paced approach to activity management. This is used to avoid symptom exacerbation or post exertional malaise, a primary symptom of M.E., which can result in greater incapacity and even relapse. Similar issues also seem present in people struggling to recover from Covid infection [...] We feel it is vital that they do not receive graded exercise therapy (GET) as a matter of course because M.E. research and patient experience has shown it to be ineffective and harmful in many cases."

Forward ME met yesterday to discuss this in more detail, and agree what further action can be taken. Minutes from the meeting will be shared as soon as possible. Some Members of Parliament have already submitted questions about the support being offered to for people experiencing long Covid. In response, Helen Whatley MP, Minister of State for Health has said:

“Leicester Biomedical Research Centre is leading our research into the long-term health impacts of Covid-19. This includes a study of 10,000 patients who were admitted to hospital with Covid-19, which will give us valuable information about the longer-term effects of the disease and how we can best support recovery.”

This study, which began in mid-August is one of the world’s largest evaluations of the long term effects of Covid-19. It will look at blood samples, using advanced imaging, along with testing physical and cognitive function. We will be keeping a close eye on this research and share updates where relevant.

UPDATE Deputy Chair of Forward ME, Carol Monaghan MP, has now tabled an Early Day Motion for debate asking the government to “swiftly consider and implement measures to support those living with long covid, including offering information and incentives to employers to retain their recovering staff who may or may not have confirmed cases due to limitations in testing, and ensuring that the NHS can support patients in their longer term recovery."

Please email your MP asking him to support this (scroll down for a template), or contact them via social media: you could reply to our tweet about it and tag them in.


NICE guideline

In July, the National Institute of Clinical Excellence (NICE) issued a statement, linked to its guideline for M.E., acknowledging that GET may not be appropriate for treating post-viral fatigue in patients with long Covid. It says:

"NICE’s guideline on ME/CFS [chronic fatigue syndrome] (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 Covid-19."

However, there remains no warning about GET added to the guideline for M.E. itself, despite concerns repeatedly being raised by Action for M.E. and others.

Currently under review, with delays due to the pandemic, a consultation on the new draft guideline will run from Tuesday 10 November to Tuesday 22 December, with expected publication in April 2021. Action for M.E. will comment on the draft in detail to highlight, as we have done in response to all NICE guideline consultations so far, the risks associated with GET, and the experiences of people with M.E. we support, including those shared in our 2019 Big Survey.


Sign the EDM: template email/letter

You can use this to ask your MP to support Carol Monaghan's EDM and find out more about M.E.

Dear MP name

As a constituent living with the serious neurological condition M.E., I’m writing to ask if you will please support EDM #864: Researching and supporting people with long Covid-19 symptoms.

Since the start of the pandemic, many researchers, clinicians and patients in the M.E. community have been warning about the possibility of a spike in cases of M.E./CFS, following long-Covid.

M.E. affects at least 250,000 people in the UK, who experience misunderstanding, neglect and disbelief, and struggle to access the services and support they’re entitled to. I have had M.E. for XXX months/years, and it’s biggest impact on my life is XXX. [Please add your own words here. Experience tells us that it’s most effective it’s short and simple]. I do not want to see those with long-Covid experience the same.

You can stand up and be a voice for hundreds of people with M.E. in your constituency. If you would like to know more, please contact Action for M.E.'s Sam Bromiley at policy@actionforme.org.uk or 0117 937 6623 to find out how you can work with the charity to support people with M.E.

Thank you and best wishes

Your name