Email sent to the Secretary of State for Health and Social Care: Data Matters.

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Hello,
I have just emailed the Secretary of State for Health and Social Care, Steve Barclay MP, again to ask for the UK Government to acknowledge that half of Long COVID meet the diagnostic criteria for M.E/C.F.S, I wrote the email with both of my ‘hats’ on (ME Foggy Dog and Stripy Lightbulb CIC) as there is a lot of crossover with the work I am currently doing.
Why does it matter? Inclusion = data. Data matters.
Whether it is the number of people who now have a M.E/C.F.S diagnosis as a result of having COVID19 (or the vaccine) or the number of people, with a range of diseases and conditions, who have been harmed by GET or CBT – they all need to be counted. Governments cannot make informed decisions without this data, as we are seeing with the current ‘economically inactive’ rhetoric.
Here is the email I sent to Steve Barclay MP.
Dear Mr Barclay,
Both of my social enterprises have been asking the UK Government to officially recognise that half of Long COVID cases are M.E/C.F.S. for over a year. 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 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.

 

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. –  https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169?journalCode=rftg20
We strongly believe that there are now around one million cases of M.E/C.F.S in the UK yet research funding and policy decisions are not taking this into account.
Vicky Foxcroft MP has tabled a number of questions on our behalf, including this one.  NICE have not said that Long COVID is a separate condition, M.E/C.F.S would be an ‘alternative diagnosis’ as stated in the Long COVID guideline. I doublechecked with NICE and they confirmed this to be the case.
This issue relates to ME Foggy Dog’s ongoing Shake It Up campaign in which we are asking for a reporting system to report harms from non-pharmaceutical treatments. This system will benefit many different patient groups as exercise and CBT seem to be go-to ‘treatments’ for the NHS irrespective of whether they have been proven to be effective/harmful or not.
Since the emergence of Long COVID in 2020, thousands of Long COVID patients have been instructed to exercise or take part in CBT yet they have not improved or ‘recovered’. Those that meet M.E/C.F.S criteria have risked deterioration when taking part (as acknowledged by the NICE M.E/C.F.S guideline) with nowhere central to report these harms to. NHS deals with complaints in-house and the data is not collated UK-wide.
I would be grateful for your thoughts on acknowledging that Half of Long COVID meet M.E/C.F.S criteria and the need for this reporting system.
Best wishes,
Sally Callow
So now we wait.
I’ll keep on keeping going!
Love Sally
and Foggy (OBVIOUSLY)
xx