First email – 18th November 2022
Dear Mr Streeting,We are a social enterprise that works for the benefit of the M.E/C.F.S community in the UK.Vicky Foxcroft MP has been supporting us with our M.E/C.F.S campaign work since the start of 2022, but has now signposted us across to you and your team with this specific issue.We have been asking the UK Government to officially recognise that half of Long COVID cases are M.E/C.F.S. This has now been stated in 6 research studies and wider research has shown there to be very little/no difference between the neurological subset of Long COVID and pre-COVID19 M.E/C.F.S. Most of these minimal differences can be explained by the timespan since infection.Here are 5 of the 6 research studies. I’ve also linked research related to SARS also known to have caused ‘CFS’.
SARS (2009) research paper from Hong Kong SARS outbreak leading to M.E/CFS = 27% of cases studied.
Yet, M.E/C.F.S is excluded from the COVID19/Long COVID narrative in the UK (Government, media, NHS comms). This is not inclusive and is also allowing the spread misinformation about this new ‘novel’ virus. It was widely anecdotally known that all existing viruses could trigger M.E/C.F.S in a minority of people, COVID19 has proven that. In fact, as a social enterprise we have been warning about COVID19 potentially causing M.E/C.F.S from the very start of the pandemic.
If you take a look at the responses Ms Foxcroft received from the DHSC, you can see that we have made little progress.
Re: this tabled question – https://questions-
statements.parliament.uk/ written-questions/detail/2022- 10-24/69712I have looked at the COVID19-Long COVID NICE guideline. It does not mention M.E/C.F.S or Post Exertional Malaise despite that being one of the most commonly reported symptoms of Long COVID but is the defining characteristic for M.E/C.F.S.It does state – ‘Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.’ – https://app.magicapp.org/#/ guideline/EQpzKn/section/ n3vwoLI believe M.E/C.F.S would be one of the many ‘alternative underlying’ diseases that are referred to. I have now personally communicated with over a thousand Long COVID patients who have now got a M.E/C.F.S diagnosis as a result of their COVID19 infection.Why is this important? NICE spent over 3 years looking at data and science to update their NICE guideline on M.E/C.F.S in November 2021. NICE very clearly stated that exercise based therapies and CBT are not to be recommended as ‘treatments’. YET, M.E/C.F.S cases currently caught up under the umbrella of Long COVID are often finding that they are told to increase their exercise/activity and participate in talking therapies as ‘treatment’. These ‘treatments’ are known to harm some M.E/C.F.S patients.The ‘economically inactive’ statistics will only increase if patients are pushed to exceed their energy envelope and will never be able to return to employment. As it is only 25% of M.E/C.F.S patients are physically able to be in employment usually part time or with flexible working.That M.E/C.F.S is a big piece of the Long COVID issue needs to be officially acknowledged.I hope you can help us with this and look forward to hearing from you.Best wishes,Sally Callow MSc
Managing DirectorStripy Lightbulb CIC (Company Number 11559299)
Second email – 16th December 2022
Stripy Lightbulb CIC, company number 11559299Dear Mr Streeting,This is a follow on email to the email sent on 18th November 2022.This is why the UK Government need to acknowledge that half of Long COVID cases meet the diagnostic criteria for M.E/C.F.S.(Screenshots are at the end of this blog.)This article is talking about rebranded Graded Exercise Therapy for Long COVID patients. The article mentions Post Exertional Malaise as the characteristic they are researching.Post Exertional Malaise is the cardinal symptom of ME/CFS and the reason NICE have stated that exercise-based rehab should not be recommended to patients with ME/CFS. I am perplexed as to how this study could have passed an ethics committee. I will be writing to the research team to see if they have followed up with participants 6 weeks after the study to see how they are doing, only then will they be able to see deterioration,Without the protection of a M.E/C.F.S diagnosis, Long COVID patients who meet our criteria but haven’t yet been diagnosed, are at risk of significant deterioration. It should be noted that pre-COVID19, it was not unusual for patients to wait 4+ years for a diagnosis. Many thousands of Long COVID patients have been diagnosed with ME/CFS since summer 2020 but many hundreds of thousands more are still undiagnosed under the Long COVID umbrella.NICE state in their October 2021 guideline –
‘Physical activity has a health benefit for most people and many conditions, but in people with ME/CFS, physical activity may make their symptoms worsen.’
‘In this guideline, graded exercise therapy is defined as establishing a baseline of achievable exercise or physical activity and then making fixed incremental increases in the time spent being physically active. It is a therapy based on the deconditioning and exercise avoidance theories of ME/CFS. These theories assume that ME/CFS is perpetuated by reversible physiological changes of deconditioning and avoidance of activity. These changes result in the deconditioning being maintained and an increased perception of effort, leading to further inactivity. This definition of graded exercise therapy reflects the descriptions of it included in evidence review G: non-pharmacological management of ME/CFS.(see link below)Page 252 onwards – https://www.nice.org.uk/
guidance/ng206/evidence/g- nonpharmacological-management- of-mecfs-pdf-9265183028I would be grateful for your support in asking the UK Government to acknowledge that half of Long COVID cases meet the diagnostic criteria for ME/CFS, it is the only way to prevent further harm to this newly chronically sick group of people. At the present time, we are told that the person has Long COVID, not M.E/C.F.S, so they are not covered by the NICE guideline.I look forward to hearing from you.Regards,
Email sent to Jonathan Ashworth MP, Shadow Minister for Work and Pensions – 18th January 2023
That M.E/C.F.S is a big piece of the Long COVID issue needs to be officially acknowledged. When M.E/C.F.S is excluded from the data informed policy and research decisions cannot be made.10% of all ‘covid19 survivors’ are developing M.E/C.F.S. – see research in next paragraph.We have also submitted written evidence to the Jobs and Employment Support Inquiry. The Government has to consider M.E/C.F.S within this inquiry. Taking this research into account – https://www.tandfonline.com/
doi/abs/10.1080/21641846.2022. 2062169?journalCode=rftg20, there could be be around 1 million cases of M.E/C.F.S in the UK (low estimate), only 5% will ever recover (as confirmed by NICE guideline). Please can I ask you to consider this with your mantra of ‘getting the economically inactive’ back to work’. For these people, without treatments or a cure, returning to work will likely be an impossibility.In your recent article you wrote –”As well as more than a million people unemployed, a record 2.5 million people are out of work and not looking for work because of ill health. This is almost half a million more people than before the pandemic.The real tragedy is they would work, if only they were supported to do so. Yet Government ministers have turned their backs on them.’We would confidently suggest that many of these additional half a million people will likely have ME/CFS as a direct result of COVID19. As a social enterprise, we have been warning of the risk of a tsunami of chronic illness in the form of ME/CFS in working age people since the start of the pandemic. The Government did not listen.As you are aware, the pandemic continues and so case numbers of M.E/C.F.S will also continue to grow thus increasing the ‘economically inactive’ statistics.I’d be grateful if Labour could acknowledge that M.E/C.F.S is a large portion of Long COVID and that you are aware that it is scientifically known that only 25% are physically able to be in employment.I hope you can help us with this and look forward to hearing from you.Best wishes,Sally Callow
Screenshots of The Telegraph article.