[Date]

 

Dear    [ Your MP’s Name ]

 

RE: Urgent Need for Biomedical Research into Treatments for

Long Covid & Myalgic Encephalomyelitis (ME/CFS)

 

I am writing to bring to your attention a matter of great urgency and huge significance.

 

In the UK it is thought that around 2.3 million people are suffering from Myalgic Encephalomyelitis (ME/CFS) or Long Covid. These are both post-viral diseases with significantly overlapping symptoms.

 

You may have noticed a Billboard Campaign in your constituency, other UK constituencies, on TV and across social media with the message:

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LONG COVID & ME/CFS

DESTROYS LIVES

 

NO HELP. NO TREATMENTS. NO CURE

 

WE DEMAND

CLINICAL TRIALS NOW!

 

WWW.NOTRECOVEREDUK.ORG

 

The billboards are self-funded by people affected by these chronic and profoundly debilitating diseases, many of whom are medically housebound or bedbound.

 

ME/CFS affects more than 390,000 people in the UK, and Long Covid 1.9 million people. That means thousands of patients in your constituency. ME/CFS and Long Covid can detrimentally impact the lives of people from all ages, genders, ethnicities and socio-economic backgrounds. People with Long Covid & ME/CFS face significant obstacles in accessing appropriate NHS medical care and support. This has a profound impact on their quality of life.

 

It also comes at a huge cost to the economy. The 2022 All-Party Parliamentary Group (APPG) report, Rethinking ME, quotes research which showed that when lost taxes, welfare benefits, and health and social care costs are considered, ‘the total cost to the UK economy of ME in 2014/15 was at least £3.3 billion.’ And the cost of Long Covid is thought to be in the region of £5.7 billion.

 

Myalgic Encephalomyelitis

ME/CFS is recognised as a chronic, fluctuating, neurological condition with no treatment or cure. It affects the body in different ways and leads to physical limitations that mean people are unable to initiate or complete normal daily activities. About 25% are so unwell they are mostly bedbound. ME/CFS is frequently precipitated by a viral infection.

 

Long Covid

Long COVID is also a post-infectious syndrome that has clinical and pathological overlaps with ME/CFS. The Office for National Statistics suggests that as many as 1.9m people could have a diagnosis of long COVID. Ongoing research suggests 50% or more of those diagnosed with Long Covid also meet the diagnostic criteria for ME/CFS. This has sparked a renewed interest into better understanding and treating both medical conditions.  

 

Mass Disabling Event

The physical symptoms of Long Covid and ME/CFS can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, and congestive heart failure. Research shows people with ME/CFS and Long Covid experience a lower quality of life than most other serious long-term conditions. NICE reports, ‘There is currently no effective treatment for Long Covid.’ And for ME/CFS, ‘There is currently no cure (non-pharmacological or pharmacological).’ This needs to change!

 

Urgent Action Needed

There has been a serious under-funding of research into the underlying pathology of ME in comparison with other long-term disabling conditions. For example, in the UK it is estimated that 131,000 people have Multiple Sclerosis yet it has received approximately 20 times the funding of ME/CFS which affects 390,000 people. ME gets less than one-tenth of the funding it deserves. The APPG on Coronavirus stressed the urgency and severity of Long Covid. It called for increased attention and dedicated resources to the tune of at least £100m.

 

As a concerned member of your constituency, I urge you to champion the cause for greater funding for biomedical research and improved medical care into these conditions. Specifically:

• Increased government funding dedicated to ME/CFS and Long Covid research, ensuring that biomedical researchers have the resources necessary to explore potential treatments, interventions and large-scale clinical trials.

• Collaboration between healthcare professionals, researchers, and patient advocacy groups to foster a multidisciplinary approach to understanding and treating these conditions.

• Initiatives to raise public awareness about ME/CFS and Long Covid, fostering understanding and empathy for those affected and garnering additional support and funding for crucial medical education.

• Improved access to healthcare services for individuals with ME/CFS and Long Covid, ensuring that they receive timely and appropriate medical care by Specialist ME/LC Consultants within ME/LC medical teams

• Specific NHS Protocols for the treatment of Severe ME/CFS and Long Covid to ensure patients have good quality hospital-based specialist treatment anywhere across the UK.

 

By taking a leadership role in addressing the urgent need for biomedical research, clinical trials and treatment options for Long Covid & ME/CFS, you can make a significant impact to the lives of people in your constituency living with these devastating and life limiting conditions.

 

We urge you to lobby government to ensure their forthcoming Delivery Plan for ME/CFS (based on the 2021 NICE Clinical Guideline for ME/CFS and public consultation in 2023) includes secure ringfenced funding for biomedical research, improved treatments and clear actions to transform ME/CFS healthcare. This will also support the healthcare needs of those with Long Covid who meet the ME/CFS diagnostic criteria.

 

I am confident that your dedication to the well-being of your constituents will be reflected in your advocacy for increased biomedical research and improved clinical healthcare into ME/CFS and Long Covid.

 

Thank you for your time and consideration.

 

Yours Sincerely,

 

[ Your Full Name and address ]

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