Severe M.E Day 2021 – 8th August

As a Community Interest Company (CIC), we concentrate on CPD accredited education rather than advocacy. However, Severe M.E day is a significant event in the M.E (M.E/C.F.S) patient community calendar and is an occasion that should be marked by all involved in working towards progress for the patient community.

As the 25% M.E Group state on their website:

… people with Severe ME lead isolated, neglected lives that continue in intense to profound suffering often for decades, without adequate support, recognition or input and people with Very Severe ME live a particularly unimaginable tortured existence.

Readers should be aware that, as M.E (M.E/C.F.S) is a spectrum disease that fluctuates, every patient faces the very real risk of deteriorating to a severe level of disability. Severe and very severe patients can improve to a lower level of disability, and mild or moderate patients can find their symptoms worsen over time.

Severe and very severe M.E = 25% of M.E (M.E/C.F.S) patients.

Worldwide, prior to the pandemic, that would have equated to roughly 7.5 million people worldwide and 62.5 thousand in the UK. The pandemic will have pushed more M.E (M.E/C.F.S) patients into the severe level of the disease through the patient either catching COVID19 or immune system reactions to the vaccine. It is too soon to know what the new figures for severe M.E (M.E/C.F.S) will be once the pandemic has been and gone.

Severe M.E (M.E/C.F.S)is included within our e-training as we believe that learners need to understand why patients need them to fully understand their disease. Employers need to understand that inadequate support within the workplace may cause a significant deterioration of symptoms and cause the M.E (M.E/C.F.S) patient to leave employment altogether, teachers need to discover that studying from home is a good alternative to becoming bedbound through having to attend school daily and that social services involvement is inappropriate. Healthcare professionals need to learn that the mildly-affected M.E (M.E/C.F.S) patient presenting themselves in their clinic and ‘looking well’ does not represent the whole M.E (M.E/C.F.S) community. A severe M.E (M.E/C.F.S) patient would not be able to attend a clinic easily or at all. The patient who is at risk of being removed from the clinic register due to repeat cancellations is physically unable to attend appointments. This is why the M.E (M.E/C.F.S) patient community is asking for pandemic ‘adjustments’ such as tele consult to continue long into the future.

The spectrum of disability is why Stripy Lightbulb CIC, and many others within the M.E/C.F.S community, have been asking for M.E/C.F.S to be included within both the official Government shielding and vaccine priority (group 6) list throughout the pandemic. We are concerned that Government advisors are unaware that M.E/C.F.S patients are ‘moderately immunocompromised’ and as such all patients face the very real risk of deterioration to a severe level as a result of catching the virus. This remains a work in progress – In the UK, we wait to see if M.E/C.F.S is on the future ‘booster’ list and/or the future group 6 list.

Be in no doubt, M.E (M.E/C.F.S) can kill in rare instances

RIP Merryn Crofts – Quote from M.E Association article after the inquest.

Merryn Crofts, 21, weighed less than six stone and had spent the last three years of her life totally bed-bound with severe ME – an incurable condition that affects 250,000 people in the UK.

The youngster was unable to take more than two teaspoons of food before suffering immense gut pain and vomiting, a coroner was told.

Merryn, from Rochdale, today became only the second person in the UK to have M.E. – myalgic encephalomyelitis – listed on a death certificate.

Quote from inquest

Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients. 

Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis. 

As M.E (M.E/C.F.S) is not recognised as a physical disease by many in the medical profession, we are in no doubt that there will have been many more deaths as a result of M.E (M.E/C.F.S). Please take a look at the Hummingbirds’ Foundation For M.E’s Memorial List.

This is Severe M.E

When we founded Stripy Lightbulb CIC, we strove to make it clear that the patients you see within your working environment, whether in healthcare, education, or business, are not representative of all patients. We do not want severe or very severe M.E (M.E/C.F.S) patients to feel further neglected. We SEE severe M.E, do you?

As a community, M.E/C.F.S patients need those who have a duty of care to get educated about the disease so they can manage their own symptoms effectively within M.E-appropriate environments.

How will YOU be marking Severe M.E day on the 8th August?

As always, sending love and support to those with the most severe form of the disease and their caregivers.

50% of our surplus (profit) goes to M.E/C.F.S biomedical research (Cure M.E/MECFS biobank) – we hope we will be able to bring about change for ALL M.E/C.F.S patients in the future through education AND research.

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