As you are hopefully aware ME Foggy Dog and Stripy Lightbulb CIC are working collaboratively on a project for Severe M.E day (8th August). This project has 7 components, one of which is a music project.

This music project needs to have a video so it can be uploaded to YouTube.

I have been asking for people living with severe M.E or their carers/loved ones to send me photographs or short videos depicting their day to day reality. I’ve received submissions from 3 people – thank you.

I have made a few suggestions but it’s not an exhaustive list:

Photos of darkened rooms

Photos of the severely ill person laying on their bed (can be anonymous ie not showing face)

Measures that have to be taken to reduce sensory overload

Video – pan around the room to show what ‘the view’ is.

Photo of carer/loved one standing outside the closed bedroom door with a sign stating the age/name of the person with severe M.E and how long they have been bedbound.

I’m open to anything that shows the lived experience of severe M.E.

No sound required.

A few people have stated they will wear their ME Action ‘Millions Missing’ t-shirt in photos/videos. Please don’t as it will be misleading. ME Action isn’t involved in the project and they aren’t benefiting from our fundraising. All monies raised will be split 50/50 between Smile for M.E and Cure M.E.

Please send your photos/videos to me via sally@mefoggydog.org (Dropbox/Google Drive links if necessary) by the 15th July. Make it clear in your email that you consent to me using your photos/video (something simple like – ‘I give permission for the attached visual content to be used for the BED for severe M.E music video’ and your full name.)

Thanks in advance!

Sally

and Foggy (OBVIOUSLY)

xx

Foggy’s adventuring is coming to an end!

Foggy’s Global Challenge ends next Tuesday!! (16th July).

Come along to his Tea-Themed Beach Party if you live in the area (and are able to)  – EVENT INFO (Southsea/Portsmouth)

Don’t forget to donate and help Foggy to fund M.E research for Cure ME (MECFS biobank) – Donate here

The post CALL TO ACTION – Photos and Video Needed For Severe M.E. Music Project. first appeared on ME Foggy Dog.

Subject: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E)

To Secretary of State for Health and Social Care Victoria Atkins MP

I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to address the unique needs of this patient population.

M.E., also sometimes known as Chronic Fatigue Syndrome (CFS), is a debilitating complex neuro-immune condition characterized by post-exertional malaise, extreme neuro-exhaustion, cognitive impairment, and other symptoms that significantly impact daily functioning. For those with severe M.E., the consequences are particularly devastating, often rendering them bedbound and reliant on extensive support for even basic activities.

Despite the severity and prevalence of this illness, there is a glaring absence of specific protocols within the NHS to cater to the complex needs of individuals with severe M.E. Consequently, many patients are left without adequate medical attention, facing significant barriers to accessing appropriate care and support. M.E can sometimes be fatal and patients have died from malnutrition as a direct result of neglect, stigma, and a poor knowledgebase in NHS hospitals. In 2024, medical professionals who understand the complex nature of the disease and who contemplate ‘off label’ treatments are finding themselves at risk of referral to the General Medical Council due to the lack of a NHS protocol.

It is imperative that the NHS recognises the urgent need to address this gap in healthcare provision and take concrete steps towards the creation of a comprehensive protocol tailored specifically to support individuals with severe M.E. This protocol should encompass the following key elements:
1. Specialised Care Pathways: Develop clear and standardized care pathways for individuals with severe M.E., ensuring access to specialist consultations, symptom management, palliative-style care, and home-based support services.
2. Education and Training: Provide comprehensive training for healthcare professionals to increase awareness and understanding of severe M.E., enabling them to deliver appropriate and empathetic care to patients.
3. Research and Innovation: Allocate resources for research into the underlying mechanisms of M.E. and the development of effective treatments, with a focus on addressing the needs of individuals with severe forms of the illness.
4. Patient Involvement: Ensure meaningful involvement of individuals with severe M.E., as well as their caregivers and advocacy groups, in the design and implementation of the protocol to ensure it reflects their needs and preferences.

The creation of an NHS protocol for severe M.E. is not just a matter of healthcare policy; it is a moral imperative to uphold the principles of equity, compassion, and dignity in healthcare delivery. Failure to address this issue perpetuates the suffering and marginalization of a vulnerable patient population, denying them their fundamental right to access quality healthcare.

Therefore, I urge you to prioritize the development and implementation of a dedicated NHS protocol for severe M.E. as a matter of urgency. By taking decisive action, the NHS can demonstrate its commitment to meeting the needs of all patients, regardless of the severity or complexity of their illness.

Thank you for your attention to this critical issue.

I look forward to your prompt response and action on this matter.

For Media Inquiries, Please Contact: Sally Callow, Founder- ME Foggy Dog

Contact – sally@mefoggydog.org

About ME Foggy Dog

We are committed to improving the lives of people living with Myalgic Encephalomyelitis and campaign for better healthcare outcomes for affected individuals. Visit mefoggydog.org to learn more about our work and how you can get involved.

[End of Press Release]

This letter is also open to the public to sign and support. You can sign your name here 

The post Press Release – Open Letter to Secretary of State for Health and Social Care Victoria Atkins MP first appeared on ME Foggy Dog.