Dr Charles Shepherd, Hon. Medical Adviser, ME Association
All-Party Parliamentary Group on M.E. Secretariat
Carol Monaghan MP, who chairs the All Party Parliamentary Group on M.E. at Westminster, and is Deputy Chair of Forward ME, has tabled an Early Day Motion (EDM) that covers issues relating to people who are not recovering from Covid-19.
There are two Early Day Motions that are worth supporting:
House of Commons
Tabled 08 September 2020
That this House is concerned that many individuals who contracted covid-19 are continuing to be affected by the virus many months after their initial infection; notes that these post-viral symptoms can include: extreme fatigue, dizziness, severe headaches and muscular pain, inability to concentrate and post-exertional malaise; further notes that exercise can amplify these symptoms; recognises that many of these symptoms are familiar to those suffering from post-viral conditions, such as myalgic encephalomyelitis; calls on the Government to make a clear statement that increasing levels of exercise may have adverse long-term health effects for those recovering from covid-19; and urges the Government to make a statement on the financial support that will be made available for people who are currently unable to return to work as a result of post-Covid-19 symptoms.
House of Commons
Researching and supporting people with long Covid-19 symptoms
Tabled 08 September 2020
That this House recognises that around 10 per cent of people experience prolonged illness after covid-19 and calls upon the Government to urgently collect and regularly report on the number of those living with long covid by following up on those with confirmed or clinical diagnoses of covid-19; notes that research into the disease should encompass both those who were and were not hospitalised to understand the true scale of the morbidity of the virus; and calls on 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.
Encourage your MP to sign the EDM
A significant proportion of people with post-Covid have symptoms that are very similar to those seen in post-viral fatigue syndrome that often precedes a diagnosis of ME/CFS. Some of these people are now being diagnosed with a post-Covid ME/CFS.
Raising this issue in parliament will help to promote research into aspects of post/long-Covid that overlap with ME/CFS. This could lead to a better understanding of how a combination of infection and the resulting immune system response can lead to debilitating activity-induced fatigue, cognitive dysfunction and symptoms caused by dysfunction of the autonomic nervous system.
These potential research initiatives could also lead to the assessment of new forms of treatment that could be relevant to ME/CFS.
- Locate the email address for your MP and alert them to the Early Day Motion. Please encourage them to sign!
- Information from the MEA on the development of post COVID fatigue, post COVID syndromes and post COVID ME/CFS | July 2020
This information is currently being updated and should be available later this week.
- Please visit the website shop and download free leaflets from our range about Covid-19, the lockdown, and ME/CFS.
You might like to use extracts from the email below to encourage your own MP to sign the Early Day Motion.
Good Morning [MPs Name],
[Email Title: [e.g. Wadebridge Constituent] Would you consider signing an EDM on Long-Covid please?]
I was hoping that you might consider signing EDM #863 and EDM #864 tabled yesterday by Carol Monaghan and Andrew Gwynne.
They are calling for recognition of the emerging problem of ‘Long-Covid’ (or a Post-Covid Fatigue Syndrome) and trying to discover why some people who have had the infection fail to recover. The second EDM also calls for research and support for those suffering from Post-Covid.
This is an issue I feel very strongly about because I have a diagnosis of Myalgic Encephalopathy or M.E. and have done for over 20 years.
The symptoms that people report from ‘Long-Covid’ seem very similar in most instances to those of M.E. and, as you may know, around 10% of people like me who initially suffered a nasty and prolonged viral infection can be diagnosed with a post-viral fatigue syndrome which then becomes M.E.
With between 130,000 and 260,000 people in the UK believed to have the symptoms of M.E. or currently diagnosed with the condition, we could be looking at a significant increase to those numbers if those with Post-Covid do not receive timely and appropriate help and support.
I hope that any research in this area could potentially discover why a small but significant minority of people who are infected by viruses become chronically disabled and are unable to return to previous levels of health. Such a discovery could lead to effective treatments and allow me, and others like me, a better life.
[Thank you for attending the inaugural meeting of the APPG on M.E. I do appreciate it and hope you will attend future meetings.]
[P.S. I don’t know if you are aware but the MRC and NIHR recently announced £3.2 million funding for DecodeME which is the largest genetics study of its kind anywhere in the world. It should help us to understand why people are susceptible to M.E. and to learn more about the condition.]
With kind regards
[Name and full address]
What are Early day motions?
Early day motions (EDMs) are motions submitted for debate in the House of Commons for which no day has been fixed.
As there is no specific time allocated to EDMs very few are debated. However, many attract a great deal of public interest and media coverage.
What are EDMs used for?
EDMs are used to put on record the views of individual MPs or to draw attention to specific events or campaigns. Topics covered by EDMs vary widely.
By attracting the signatures of other MPs, they can be used to demonstrate the level of parliamentary support for a particular cause or point of view.
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