As a social enterprise based in England, we work for the benefit of the M.E./C.F.S. community in all nations of the UK and internationally. We don’t allow our work to be restricted by geographical borders or political boundaries. Our work focuses on educating professionals on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S) but due to the political nature of, and social issues surrounding, M.E./C.F.S, we have found ourselves increasingly involved in advocacy and campaign work.
An inclusion issue has been on our radar for a while, due to the many conversations we have online with members of the M.E./C.F.S. community, and on the 19th August 2024, we wrote to the Secretary of State for Health and Social Care Wes Streeting MP to express our concerns and suggestions on a way forward.
Email dated 19th August 2024 –
FAO: Secretary of State for Health and Social Care.
Dear Mr Streeting,
I hope this email finds you well. I am writing to you as a social entrepreneur and Myalgic Encephalomyelitis campaigner who has been actively campaigning for the development and implementation of a specific NHS protocol for the past six months. This campaign has required a considerable investment of my time and energy, involving numerous meetings, communications, and coordination with various stakeholders.
Throughout this process, I have become increasingly aware that key players—particularly those with critical insights and experiences—are being excluded from the national debate surrounding the future of healthcare provision and standard of NHS care for people living with M.E./C.F.S. I believe that this exclusion hampers the effectiveness of discussions.
Two such key players are my social enterprises ME Foggy Dog and Stripy Lightbulb CIC. Their unique perspective and expertise would greatly contribute to discussions relating to M.E./C.F.S. policy and reform and help ensure that any resulting policies are both equitable and effective. It is crucial that their voices are heard and that they are included as stakeholders in any relevant policy debates.
Given the importance of developing M.E./C.F.S. provision that is fit for purpose, including a NHS protocol for severe M.E, that truly reflects the needs and experiences of the M.E./C.F.S. community, I urge you to ensure that M.E Foggy Dog, Stripy Lightbulb CIC, and similar grassroots organisations are included as stakeholders in any future policy discussions. Their involvement would greatly enhance the quality and relevance of the resulting policies and protocol, ultimately leading to better outcomes for patients.
Increasingly, members of the M.E./C.F.S. community are frustrated that the national charities and organisations who are currently ‘around the table’ do not adequately represent them. I strongly believe that grassroots organisations such as mine will lead to better representation for this vulnerable group.
I respectfully request that you advocate for the inclusion of ME Foggy Dog and Stripy Lightbulb CIC in these discussions. Their involvement will not only enhance the quality of the debate but also help to ensure that the final outcomes are well-rounded and reflective of the needs of all involved.
Thank you for your time and consideration of this matter. I look forward to your support in ensuring a more inclusive and comprehensive policy development process.
Kind regards,
Sally Callow
Managing Director: Stripy Lightbulb CIC
also Founder: ME Foggy Dog
We have encountered a very firm brick wall every time we have contacted any Westminster department (usually Department for Health and Social Care and Department for Work and Pensions). It always feels like the equivalent of ‘you’re not on the list so you’re not coming in’. Absolutely nothing against any of the people who take part in Government policy decision meetings or groups as representatives of the M.E./C.F.S. community but something obviously is not quite right, discontent is never hard to find in threads and comments on social media.
More voices are needed to represent this complex disease that does not fit into one particular social group.
Here is the reply we received from the Department of Health and Social Care on 16th September 2024-
Dear Ms Callow,
Thank you for your correspondence of 19 August to the Secretary of State for Health and Social Care on behalf of ME Foggy Dog and Stripy Lightbulb CIC regarding involvement in the policy development for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). I have been asked to reply.
The Department is grateful for your continued interest and investment in supporting the ME/CFS community.
As you will be aware, the UK-wide 2023 consultation on the ME/CFS interim delivery plan gathered views from individuals with ME/CFS, carers, medical professionals and charities and organisations for ME/CFS. The Government is committed to publishing the response to the 2023 consultation. The Department is in the process of finalising the response.
The consultation responses, alongside continued stakeholder engagement will inform the development of the final delivery plan which the Government aims to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. A task and finish group for ME/CFS, with membership drawn from former working groups and the previous task and finish group that helped to develop the interim delivery plan, will be stood up again to help to develop, as well as help to oversee and monitor the delivery of actions agreed in, the final delivery plan. The task and finish group will consist of key stakeholders, including charities and those with lived experience of ME/CFS to ensure policies and actions are relevant and effective.
I hope this reply is helpful.
Yours sincerely,
Correspondence Officer
To those members of the community who are concerned about accurate representation and inclusion – we asked on your behalf and this was the response. It is not solely Stripy Lightbulb CIC and ME Foggy Dog who are not ‘around the table’, there are many other groups and organisations who also can’t seem to get past that brick wall.
However, this continual exclusion means we are finding other ways to work on key issues, it’s certainly stretching our skills, energy levels, and abilities but we are still working doggedly behind the scenes for people living with M.E./C.F.S.
