Urgent Appeal to Address Non-Adherence to Myalgic Encephalomyelitis NICE Guidelines in NHS Hospitals

A Doctor is wearing a blue tunic, a stethoscope is hanging around their neck and they are carrying a clipboard.

I have been campaigning to address the non-adherence to Myalgic Encephalomyelitis NICE guidelines in NHS hospitals since 24th February 2024. This campaign began with an ‘open letter’ to the General Medical Council. As I stated at the time, I knew that what I/we were demanding was outside of the GMC’s remit, however what I/we are …

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Open Letter to the General Medical Council – Urgent Appeal to Address Non-Adherence to Myalgic Encephalomyelitis NICE Guidelines in NHS Hospitals

This ‘open letter’ was emailed to the GMC at 3pm today. The ‘Open letter to the General Medical Council signed by 282 people as at 12pm today (Organise are closing this letter as it ‘doesn’t meet their community standards’ #NoComment – NHS staff use this platform). Urgent Appeal to Address Non-Adherence to Myalgic Encephalomyelitis NICE …

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Foggy’s Global Challenge – A Refresher!

Hello! It occurred to me this week that Foggy’s ‘newer’ Followers may not know what Foggy’s global adventuring is for or how Foggy-sitting works. This blog is a refresher for ‘old’ Followers and a guide for those who discovered Foggy’s awesome-ness after 2020! As a social enterprise, ME Foggy Dog campaigns for increased Government research …

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Social Enterprise Day 2023

Today is Social Enterprise Day – a moment to raise awareness of our pioneering business model and celebrate the more than 100,000 social enterprises in the UK working to benefit people and planet. Social enterprises are businesses that trade for a social or environmental purpose. Our social purpose is to improve the quality of life …

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List of Reasons Why This Redefining Gravity Benefit Concert Is Needed

Sally Callow speaking at the 2023/2024 Launch Event for ME Foggy Dog

It’s been a long day of planning and researching for this benefit concert challenge so I’m cheating a bit, I posted this as a thread on X earlier but, as the algorithm means barely anyone will have seen it, and because many MEeps have left X for greener pastures, I am reposting it as a …

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Should We Really Be Resorting To DIY Measures During An Ongoing Pandemic?

Hello, During the pandemic I have been fighting for M.E patients to have access to shielding and group 6 priority for vaccines but haven’t got anywhere, same as all other M.E organisations and national charities. I have been increasingly aware that being vaccinated doesn’t prevent infection or stop ‘mild’ infections from negatively impacting my M.E …

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M.E and COVID19 – Life Is Limited

Hi, This blog is going to be about something that has been on my mind for months (lots of months) but it is the first time I have blogged about it. Has shielding and avoiding social contact become my new normal? Seems so. I miss my old life. By that I mean my pre-M.E life …

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UK Government/ NIHR Research Funding Allocation for M.E/C.F.S since 2020

Hi,

A couple of months ago, I started to look into how much money M.E/C.F.S research funding had been allocated by the UK Government since 2020. The most recent statistics I have been able to find have been 2019-20 and it has been unclear if we have been given ANYTHING in the past 3ish years.

I submitted a Freedom of Information (FOI) request to the Department of Health and Social Care on 24th July –

Can I please ask for all documentation around the Department of Health and Social Care and other Government health research agencies’ funding allocation into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) in the years 2020/21, 2021/22, and 2022/23?
Today, 21st August 2023, I received a reply.
Your request has been handled under the Freedom of Information Act 2000 (FOIA).
DHSC holds information relevant to your request.
Please see attached spreadsheet titled MECFS funding allocation, with details of National
Institute for Health and Care Research (NIHR) spend for Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome (ME/CFS) research for financial years (FY) 2020/21 and
2021/22.
The figures for FY 2022/23 would require generating new information and are therefore
exempt under section 8(1) of the FOIA, as DHSC is not required to create data to answer
your request.
The spreadsheet has confused me as it contains data that is outside of the scope of my request BUT I am going to copy and paste it below in its entirety just in case I am missing something!
Below are the contents of the spreadsheet.

Let’s play a game – Spot the biomedical research

1.
 Long covid programme
NIHR Centre – CCF
Funder – NIHR
Chief Investigator – Prof Nicholas Sculthorpe
Contractor – University of the West of Scotland
Start date – 16/7/21
End date – 15/2/23
Total Award Budget – £437.398
Award title – Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial
2.
NIHR Centre- CCF
Funder – NIHR
Chief Investigator – Prof. Paul Little
Contractor – Southern Health NHS Foundation Trust
Start date – 16/02/2015
End date – 31/05/2018
Total Award Budget – £99,962
Award Title – Fatigue: acute fatigue Assessment and Management in Everyday practice (FAME)
3.
NIHR Centre – CCF
Funder – NIHR
Chief Investigator – Prof. Esther Crawley
Contractor – Royal United Hospitals Bath NHS Foundation Trust
Start Date – 02/02/2020
End Date – 31/12/2023
Total Award Budget – £149,457
Award Title – Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice.
4.
NIHR Centre – CCF
Funder – NIHR
Chief Investigator- Dr Lisa Riste
Contractor – *NHS Manchester CCG
Start Date – 01/03/2011
End Date – 28/02/2014
Total Award Budget – £234,129
Award Title – Chronic Fatigue Syndrome (CFS/ME) interventions within the Primary Care Setting: Developing resources for support and self-management in primary care.
5.
NIHR Centre – CCF
Funder – NIHR
Chief Investigator – Professor Peter White
Contractor – Barts Health NHS Trust
Start Date – 01/12/2011
End Date – 31/03/2016
Total Award Budget – £343,008
Award Title – Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome: a randomised controlled trial in secondary care
6.
NIHR Centre – CCF
Funder – NIHR
Chief Investigator – Dr Hazel O’Dowd
Contractor – North Bristol NHS Trust
Start Date – 01/04/2012
End Date – 31/07/2014
Total Award Budget – £214,613
Award Title – Early Intervention In Fatigue: A Feasibility Study
7.
NIHR Centre – CCF
Funder – NIHR
Chief Investigator – Dr Emma Dures
Contractor – University Hospitals Bristol NHS Foundation Trust
Start Date – 01/06/2018
End Date – 31/05/2020
Total Award Budget – £248,079
Award Title – Fatigue – Reducing its Effects through individualised support Episodes in Inflammatory Arthritis (FREE-IA): A Feasibility Study for a Randomised Controlled Trial
8.
NIHR Centre – NIHR Academy
Funder – NIHR
Chief Investigator – Prof. Esther Crawley
Contractor – University of Bristol
Start Date – 01/03/2009
End Date – 28/02/2014
Total Award Budget – £816,199
Award Title – Evidence based prevention, identification and treatment of chronic fatigue syndrome (CFS/ME) in children and young people
9.
NIHR Centre – NIHR Academy
Funder – NIHR Fellowships
Chief Investigator – Dr Maria Loades
Contractor – University of Bristol
Start Date – 01/10/2016
End Date – 28/02/2022
Total Award Budget – £317,866
Award Title – Depression in paediatric chronic fatigue syndrome (CFS/ME)
10.
NIHR Centre – NIHR Academy
Funder – NIHR Fellowships
Chief Investigator – Miss Amberly Brigden
Contractor – University of Bristol
Start Date – 01/10/2017
End Date – 31/03/2021
Total Award Budget – £222,971
Award Title – Developing an effective intervention for younger children (5-11 years) with Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME)
11.
NIHR Centre – HEE
Funder – HEE/NIHR Integrated Clinical Academic Programme
Chief Investigator – Dr Deborah Antcliff
Contractor – Pennine Acute Hospitals NHS Trust
Start Date – 01/06/2016
End Date – 31/01/2020
Total Award Budget – £108,331
Award Title – Developing an activity pacing framework for the management of chronic pain/fatigue
12.
NIHR Centre – NIHR Academy
Funder – NIHR Fellowships
Chief Investigator – Dr. Simon Collin
Contractor – University of Bristol
Start Date – 01/01/2014
End Date – 31/12/2016
Total Award Budget – £320,886
Award Title – CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services
13.
NIHR Centre – NIHR Academy
Funder – NIHR Fellowships
Chief Investigator – Prof. Esther Crawley
Contractor – University of Bristol
Start Date – 01/01/2014
End Date – 28/02/2019
Total Award Budget – £840,691
Award Title – Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME).
14.
NIHR Centre – NIHR Academy
Funder – NIHR Fellowships
Chief Investigator – Prof. Esther Crawley
Contractor – University of Bristol
Start Date – 01/05/2016
End Date – 30/04/2022
Total Award Budget – £1,026,403
Award Title – Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK
That game was a little disappointing wasn’t it?! None were biomedical research studies that would actually result in a biomarker, treatments, or *gasp* a cure for our disease.
As we all knew already, not only is our research MASSIVELY underfunded, but the studies that are funded are mostly biopsychosocial in nature.
Studies 2, 3, 4, 6, 8, 11, 12, and 13 are not between the years specified in my FOI request and ONE was granted (start date) during the time specified though it was for a Long COVID programme,  7 studies ended during the specified period.

NO funding has been allocated by the UK Government for M.E/C.F.S (Long COVID) since July 2021.

In the years 2020/21, 2021/22 we had £437.398 (for a Long COVID programme)

To be clear – I do not know when the year end is for research funding but it must be in the Autumn as otherwise data for 2022/23 would be available (they would have to ‘create data’ to respond to my request).

I have a few other FOI requests to submit to other departments and I’ll share information when I have it.

 

Let’s redefine gravity

This is why I am trying to raise as much money as I possibly can through charitable donations to take control of our narrative out of the hands of those who enforce the status quo and have been for decades. I find it very odd that our charitable organisations and M.E research facilities such as Cure M.E can propose, and fund using charitable donations, very good BIOMEDICAL research studies yet all of those submitted to the NIHR aren’t deemed good enough.

This is exactly what my campaign ‘Redefining Gravity’ is all about. I have reached the point where I no longer see any benefit in begging endlessly for increased Government research funding for our disease. I am now putting a heck of a lot of my energy into Redefining Gravity – a benefit concert to raise as much cash as possible for biomedical research for Cure ME.

Perfect world –

We raise millions of pounds (and a shedload of public awareness), a biomarker is found with this injection of cash and the Government has no option but to to take ME/CFS seriously in terms of biomedical research funding.

Please check out www.redefininggravity.co.uk

Get in touch via team@redefininggravity.co.uk if you have the talent, skills, knowledge, or expertise to help with this challenge.

‘The Redefining Gravity Challenge’ – Explainer video

As always, thank you for your support and enthusiasm.

Love Sally

and Foggy (OBVIOUSLY) xx

 

 

ps. Don’t forget that Foggy’s 2023-24 Global Challenge is a year-long challenge to travel 250,000 miles and raise one million pounds for Cure ME. Please help by offering to Foggy-sit or by donating – Donate here

See mefoggydog.org for more info.

‘Redefining Gravity’ Fundraising Concert – Open Letter to Chris Martin / Coldplay

Hello! By now, you should all know that ME Foggy Dog has launched a concert challenge project called ‘Redefining Gravity’, it launched on Monday 17th July 2023 during this event to mark the launch of Foggy’s Global Challenge – yes –  Foggy is back to global adventuring!! He’s currently on his way to Munich – …

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