For the past 11 months, Stripy Lightbulb CIC has been working to get M.E/C.F.S included within the official COVID19 narrative in the UK. It is now December 2022 and yet the UK Government has still not acknowledged that COVID19 has triggered many thousands of cases of M.E/C.F.S.
We have been working to find out why that is the case when M.E/C.F.S diagnoses as a result of COVID19 have been happening since Summer 2020. Hundreds of thousands of ‘Long COVID’ patients now meet the diagnostic criteria for M.E/C.F.S in the UK (millions more worldwide). There are now at least 6 international research papers that state around half of ‘Long COVID’ cases meet the diagnostic criteria for M.E/C.F.S (links at the bottom of this blog), and thousands of wider research studies have yet to find any scientific differences between this specific subset of ‘Long COVID’ and M.E/C.F.S. Any difference that have been found can usually be explained by the time span since acute viral onset.
Watch this video from 15 November –
Response from Neil O’Brien MP (Department of Health and Social Care) on 2nd November –
The long-term effects of COVID-19 and myalgic encephalomyelitis are separate conditions as defined by the National Institute for Health and Care Excellence.
Following this response, we sent two emails to the National Institutes of Health and Care Excellence.
Email – 4 November 2022
As a social enterprise, Stripy Lightbulb CIC works for the benefit of the M.E/C.F.S community – including the many caught up under the umbrella term ‘Long COVID’.
Many in the Long COVID community have been receiving an M.E/C.F.S diagnosis for at least the past 18 months and there are now at least 5 international scientific research studies stating that between 42-59% of Long COVID cases meet the diagnostic criteria for M.E (M.E/C.F.S).
Please find links to research below. All have found COVID19 causes ME/CFS though percentages vary between 42% – 59% of Long Covid cases. As a community, and as a M.E campaigner and social entrepreneur, we say ‘around half’.
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 is not included within any COVID19 or Long COVID data collection in the UK and is excluded from the official Long COVID narrative.
Vicky Foxcroft MP (Shadow Minister for Disability) tabled this question on my behalf – https://questions-statements.parliament.uk/written-questions/detail/2022-10-10/59159
As you can see, the Department of Health and Social Care replied –
‘The Department does not intend to collect this data’.
When I asked Ms Foxcroft’s team if we could ask further questions as to who decided this, and to see if we could ask for an explanation, I was told it was NICE’s decision and I would need to contact you for more information.
Can I please respectfully ask why NICE has ‘advised’ the Government to not collect this data? (If that is the case) As you are aware, the lack of quantitative data caused difficulties during the M.E/C.F.S guideline review process.
Long COVID-triggered M.E/C.F.S patients are feeling stigmatised and forgotten about by authorities -they need to be included and acknowledged.
I look forward to hearing from you,
NICE response 4 December 2022
Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding the collection of data on the number of cases of Myalgic Encephalomyelitis triggered by COVID-19. I appreciate this is an important matter and I hope the following information will be helpful.
I believe the Department’s response to Vicky Foxtrot MP’s follow up question refers to the fact that we have separate guidelines on the topics of “managing the long-term effects of COVID-19 [NG188]” and “Myalgic Encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [NG206]”.
As background, when guideline NG188 was being developed, the panel discussed ME/CFS and decided that consideration of differential diagnoses was accounted for in recommendations in the sections on assessment and investigations and referral, and nothing specific about CFS/ME needed to be added to the guideline. The panel also agreed that no recommendation could be made about symptom overlap or likelihood of developing CFS/ME because not enough was known about this.
The management of CFS/ME is therefore outside the scope of the long term effects of COVID-19 guideline and the panel were clear that conclusive parallels could not be drawn.
We have not specifically advised DHSC on the collection of this data, as this is not NICE’s role.
I hope this information is helpful.
Email – Freedom of Information request
We asked for ‘all documentation around NICE’s decision to keep Long COVID and M.E/C.F.S as separate conditions‘. We received 11 FOI documents on 4th December 2022- See extracts and images below.
17th July 2020 – 30th October 2020
Readers are able to click on each image to read the documents themselves. Apologies, they may not be in date order (I.T issues!)
Sent:27 October 2020 12:42
To:Fiona Glen; (NHS HEALTHCARE IMPROVEMENT SCOTLAND);
(NHS HEALTHCARE IMPROVEMENT SCOTLAND)
Subject:Re: [EXTERNAL] Long COVID guideline – NICE guideline ME/CFS
Thanks for asking us to comment on this.
If we look at the scope of the “long covid” guidance, it clearly states that conditions that may mimic
ongoing effects of covid‐19, such as ME/CFS will be excluded, in the same way that other conditions as a
result of Covid‐19, with clear guidance and pathways for care will also be excluded. This is likely to include,
but is not limited to pneumonia, stroke, renal failure etc, depending on the evidence that is reviewed, so
this exclusion is not exclusively ME/CFS.
I understand that NICE guidance is being produced on ME/CFS and is due for release shortly. ME/CFS is a
currently seen as a separate condition and until evidence shows us otherwise, should remain a distinct
condition. The evidence base may change over the course of time and the iterative approach of this
guidance will enable the evidence to be continually reviewed and the guidance changed as appropriate if it
needs to. It is really important that we do not make assumptions at the early stage of a new disease before
the evidence has been fully reviewed. Assuming overlap or similarities at this stage in the process is not
beneficial , whereas ensuring the minimal amount of bias as this guideline is developed is essential.
Since we are not including the chairs of other relevant guidance such as stroke, pneumonia or medically
unexplained symptoms, I don’t understand why we would ask the chair of the ME/CFS guidance to be part
of this process. It’s essential that the guideline panel is independent of external influence which may result
in bias whilst this is in development.
Work in progress
We can clearly see that M.E/C.F.S was ‘excluded’ alongside other known outcomes of COVID19. However, NICE has not stated that COVID19 cannot trigger M.E/C.F.S. We believe M.E/C.F.S would be a ‘differential/alternative’ diagnosis as mentioned in the Long COVID NICE guideline.
Signs and symptoms that develop during or after an infection consistent with COVID‑19, continue for more than 12 weeks and are
not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and
change over time and can affect any system in the body. Post‑COVID‑19 syndrome may be considered before 12 weeks while the
possibility of an alternative underlying disease is also being assessed.
Our work continues and will only stop once it is formally acknowledged by the UK Government that M.E/C.F.S is a known outcome of COVID19, and when the UK Government starts collecting data on how many people now have M.E/C.F.S as a result of COVID19 in the UK.