Severe M.E.

#sufferingthesilence #MEAction

I am in the process of preparing a resource for pharmacists on the long term physical illness myalgic encephalomyelitis, with the support of Action for M.E., but in the meantime, here’s a post I wrote for Severe M.E. Day. The most severe form of the neurological illness affects 1 in 4 M.E. patients[1].

There is a list of most of the symptoms of myalgic encephalomyelitis on the NHS Choices website. Fatigue is often described as the main symptom but there are many others, which can be just as debilitating, if not more so, which is partly why patients feel that the term chronic fatigue syndrome isn’t adequate as a name for the condition. Another name, systemic exertion intolerance disease, has been suggested by the US Institute of Medicine, and I will write more about this in a future article.

There are different levels of severity of M.E. and a few different ways of describing these. NICE guideline CG53 compares the extent of disability and levels of functioning in M.E. patients with multiple sclerosis, systemic lupus erythematosus and congestive heart failure[2]. The guideline uses mild, moderate and severe to describe severity.

“People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.”[2]

The severe M.E. pages of the Action for M.E. website have further information and the International Consensus Primer for Medical Practitioners has more detailed statistics and information. Personally, I prefer AYME’s Functional Ability Scale, as it fully describes the level of functioning and impact on quality of life.

Fortunately, although I have had M.E. for nearly 25 years, the longest I’ve had severe M.E. for is two years. More recently I have only had the severe level of symptoms for short periods of a few weeks at a time. Some people are unable to get out of bed, move around the house, dress or feed themselves for decades. Three years ago I had a relapse which has meant that I have been at moderate-severe level since then, with a recent improvement to moderate. I’ve written about my severe relapse and what everyday life is like with severe M.E. for Action for M.E.’s #hiddenfacesofME social media campaign in my article, Out of sight, out of mind.

Althought there are no official statistics kept, it is estimated that around 1 in 4 of people with M.E. are severe for prolonged periods[2]. These unfortunate sufferers of the illness have spent years being bed-bound in a darkened room, with very little functioning, and some even need to be tube-fed.

Severe M.E. Day (8th August) is a day when M.E. patients around the globe raise awareness on behalf of these people, as they are hidden away from society, unable to campaign themselves. We also remember people who have died as a result of their severe M.E., or complications which develop.

What we need for people with severe M.E. is better home care and also the amount of research funding to be in proportion to its severity and impact on lives and families. I have written the blog article Help shape research in the NHS! about an opportunity for patients, the public and health professionals to submit ideas for research in the NHS to be funded by NIHR. Let’s take this opportunity to get severe M.E. the level of research funding it really deserves.

I am struggling to think and write now, due to my cognitive symptoms, so I will leave you with some blogs and videos by people with severe M.E., who do a much better job of conveying what life is like for them than I could. You could also check out the Twitter hashtag #SevereME.

Action for M.E. have made the following video to raise awareness. Please consider donating to the charity I work with as Volunteer Pharmacist by texting EBME99 £3/£5/£10 to 70070 or click here to go to my JustGiving page.

As always, comments are welcome in the section below.

References

1 NHS Choices | Chronic fatigue syndrome | Overview http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx (accessed 8 Aug 2015)
2 NHS England. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) | Guidance and guidelines | NICE. NICE.org.uk. 2007. https://www.nice.org.uk/guidance/cg53 (accessed 8 Aug 2015).