Hi!
8th August 2024 will be a significant date.
Tomorrow’s exploits have been 6 weeks in the making!
BED for Severe M.E. is a collaborative project of ME Foggy Dog and Stripy Lightbulb CIC (two social enterprises founded by me, Sally Callow, a person living with M.E. since 2006 and a M.E campaigner since 2014).
Desperate
‘Desperate’ is the one word I would use to describe people living with severe M.E’s need for improved care. A quarter of our community have been waiting for a very long time to have ANYTHING from healthcare providers. In 2024, there are no treatments, cures, or NHS protocol/policy specifically for severe Myalgic Encephalomyelitis (nor for any level of M.E severity). Although dying from M.E. is relatively rare, it does happen (mostly preventable) but most, if not all, people with severe M.E deteriorate as a direct result of the uneducated/ill-informed ‘care’ provided by NHS staff during hospital stays (for any reason, M.E.-related or not).
TiM.E. for change.
At the start of February 2024, Sarah Boothby mentioned to me in a private DM conversation that there are no NHS protocols in place for M.E. It struck me like a lightning bolt. I had always known that ‘care’ was poor and inadequate but I had never heard it said that there was NOTHING in terms of policy for hospital staff to be guided by (I’d also naively though that hospitals adhered to NICE guidelines or equivalent in hospital settings in life or death situations). Considering I am an active campaigner on M.E and have been for the past decade, I am gobsmacked that I had never seen campaigns for NHS protocols before. The first time I saw a campaign for a NHS protocol within our community, it was one I had created myself. Thank you to Sarah Boothby for planting the seed that lead to the ME Foggy Dog’s NHS Protocol campaign. Sarah’s personal knowledge and experience of the need for this protocol/policy is at the centre of everything this campaign aims to achieve.
As long-time followers of ME Foggy Dog know, I have been campaigning since 12th February 2024 for a NHS protocol. We have had a lot of shuffling about amongst the Westminster Government and there have been a couple of Secretary of State’s for Health and Social Care since the campaign launched. I am continuing to ‘lobby’ all Governments of the UK with this issue but am now also adding another layer to this campaign.
Reply received from Secretary of State Wes Streeting’s staff 31st July 2024
Dear Ms Callow,Thank you for your correspondence of 10 May about care protocols for people with severe or very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have been asked to reply. I am very sorry that you did not receive a reply to your earlier correspondence dated 27 February.
ME/CFS services are commissioned across England by Integrated Care Boards (ICBs) which take into consideration the attributes of local populations to assess the level of need. The process of commissioning services should also consider best practice guidance such as the National Institute for Health and Care Excellence (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.
As you may be aware, the NICE guideline on ME/CFS covers every aspect of the condition from its identification and assessment, before and after diagnosis, to its management, monitoring and review. It also highlights what support should be offered to people with suspected or diagnosed ME/CFS and their families and carers, and what information, education and support should be available for health and social care professionals. The guideline recognises that people with severe or very severe ME/CFS warrant special consideration and it outlines a series of specific expectations for care for this group of patients.
When exercising their judgement, professionals and practitioners are expected to take NICE guidance fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. However, it is not mandatory to apply the recommendations, and NICE’s guidelines do not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families, carers or guardians.
I hope this reply is helpful.
Yours sincerely,
Correspondence Officer
Ministerial Correspondence and Public Enquiries
Department of Health and Social Care
I know!
I am very aware of the NICE guideline. Are they aware that adherence is minimal? I am very aware of what SHOULD be happening, of what Drs in hospitals SHOULD be considering, the problem is they aren’t and no one seems willing to hold them to account or implement policies that would improve the level of care of people living with severe M.E.
My work continues.
‘Going local’!
I participate in a number of NHS collaborative groups around the UK and members of these groups have suggested that reaching out to individual regional Boards and Trusts would add another layer of pressure on the Department for Health and Social Care and NHS England/Wales/Scotland. Health and Social Care Northern Ireland works slightly differently but the action would work in the same way. Whilst I try to reduce the burden on people living with M.E. and try not to ask for help unless absolutely necessary, this is ABSOLUTELY NECESSARY. I need you all to contact your local Board/Trust and ask them to start a conversation with ME Foggy Dog about a potential protocol and why it is required. I have provided a template email and contact information to make this bit of the campaign accessible for as many people as possible. Please help this campaign, all info can be found here.
If I/we have to improve care one GP surgery, one hospital, one Health Board, one ICB at a time…that’s what I/we will do!
Who’s with me?!
This NHS protocol campaign and the awfulness of 2024 in terms of severe M.E ‘care’ are what drove me to create BED for Severe M.E.
BED for severe M.E consists of 7 components, all offer different things to engage with.
BED for Severe ME – ‘Wear Your PJs to Work’
This fun ‘fancy dress’-style fundraiser is aimed at workplaces. I’ve been asking employers to encourage staff to wear PJs (clean!) to work and donate £2 to do so. It’s another attempt by me to reach outside our bubble and get the general public to engage with our cause. I haven’t received any emails to say businesses are participating. I’m hoping to be pleasantly surprised tomorrow! However, this is the first annual campaign so I have a whole year to build on this component of BED for severe M.E. If you want to help me to ‘recruit’ businesses and want to join Team Foggy – get in touch!
BED for Severe – M.E Music Project 1
This project unfortunately faltered 5 hours before the deadline. A collection of chronically sick (M.E and LC) musicians and I had been working on this for over a month but a software issue meant we had to scrap the project. We have saved everything we had created though and will hopefully be returning to it at a later date. Keep ’em peeled! Thank you to these talented people for their energy, creativity, and enthusiasm with this AWESOME project!
BED for Severe M.E – Music Project 2
All will be revealed tomorrow – 8th August! Check out the website for all info. Music project 2
BED for Severe M.E – Buy a Badge
This was an experiment! My past history with selling merchandise to raise funds has always been hit and miss. I have been over the moon at the reaction to these badges. We sold out yesterday after selling 52 badges. All profits will be split 50/50 between Smile for ME and Cure M.E. If there is enough will for me to offer these badges for people to buy after tomorrow I will order more, otherwise I will sell them again next summer. Let me know if you would wear these badges all year round (some have said they will).
BED for Severe M.E. – Donate
BED for Severe M.E 2024 is a fundraiser for Smile for M.E. and Cure M.E (MEcfs biobank). The fundraising pot is on Paypal. All donations (after Paypal fees) will be split 50/50 between these two organisations. I will be transparent about how much has been raised and will publicise the amount fundraised. Please donate here and support these two AWESOME M.E organisations. Any amount is very gratefully received.
BED for Severe M.E – NHS Protocol
As mentioned above.
BED for Severe M.E – ‘In Loving Memory’ Board
This board is to remember the lives of those who have passed away with Severe M.E. through the eyes, memories, and recollections of their loved ones (family and friends).
The board will be posted online to show the human impact of Severe M.E. on August 8th 2024.
Add your post here
BED for Severe M.E – BED ‘Party’ On Social Media
Get involved! Community participation is essential!
Using the hashtag #BedForSevereME and #PjsAndProtocol, we’re asking people with Severe M.E. / carers /loved ones to take photos showing their favourite pyjamas and post it on social media to help raise awareness on 8th August. You can also be in with a chance of winning either a £50 Cyberjammies gift voucher or set of pyjamas/loungewear from Tesco! Info on link below,
‘Mingle’ online with those awesome people who have shown support and solidarity by wearing their PJs to work!
All information, links, and downloadable resources can be found here.
The resources were made available a few days early for those with severe M.E who will only be able to participate by scheduling social media content. Please make sure ME Foggy Dog-created content related to BED for severe M.E isn’t posted online before 8th August.
Phew!
It’s been a whirlwind! One that has, for the past 9 days, been hampered by a COVID19 infection. I am still testing positive and have minimal energy but am pleased to say that everything is now set and raring to go!
Stripy Lightbulb CIC was going to deliver an educational webinar on the 8th August to professionals with a duty of care (pwME are also welcome but weren’t the ‘target audience’) however, my ongoing COVID19 infection caused me to cancel the event yesterday. I am hoping to offer either another webinar event or recording in future, let me know if you would like more information when I am ‘well enough’ to produce this educational content.
Looking forward to seeing you all in your PJs tomorrow!
Let’s do this!!
Love Sally