Severe and Very Severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

ME/CFS is a serious, long term, and debilitating disease. Patients' energy levels are limited, activities have to be carefully managed to avoid making the condition worse. The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months.

ME/CFS is very unpredictable. The level of disability and symptoms can vary a lot from day to day. People usually need lots of rest before and after an activity and are rarely seen on their bad days. When symptoms are at their worst, often during a crash, people may need extra support (preparing meals, washing, dressing and eating) for days or even weeks at a time.

Most people with ME/CFS have problems standing or being upright [1]. Many patients report being unable to stand even for a few minutes [2]. The majority of ME/CFS patients experience some type of pain [3] which can be persistent and difficult to control [2].

Severity ranges from mild to very severe. Around 25% are severely affected, are house- or bed bound and dependant on carers for their every day needs [4]. Very severe patients are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to light and sound [5]. They are similar to a critically ill patient 24 hours before they die, except they live like that for years and years [6].

Relapses are common, patients can become significantly more disabled for months or even years; Some never recover. Very severe patients are extremely vulnerable with minimal or no margins. Even small mistakes can lead to prolonged and severe deterioration [7]. Infection is probably the most common cause of relapse. Sensible precautions to prevent infection are advisable [8].

The majority of severely affected patients are unable to access any services and are not offered homne visits or specialist inpatient care [4]. ME/CFS is not rare. It affects approximately 1 in 250 people [5] and is more common than MS and Parkinson's Disease. Doctors' knowledge on ME/CFS is seriously lacking. Misdiagnosis and inappropriate management are a significant risk for severe patients [4].

Some of the most severe patients have problems swallowing and tolerating food which is often mistaken for a psychological disorder [9]. Severe ME/CFS is sometimes misdiagnosed as Pervasive Refusal Syndrome, a dramatic withdrawal and refusal to move, talk, eat or drink.

Parents of children with severe ME/CFS have been accused of falsifying or exaggerating their child's condition. Some have been subject to child protection proceedings and in some cases children have been removed from their parents [10].

Many severe patients have had such negative experiences that they no longer contact healthcare providers. Help that harms is worse than no help [7].

Note
Read about my story and a disclaimer in the about section of this channel.

References
[1] https://meassociation.org.uk/about-wh...
[2] https://www.fda.gov/files/about%20fda...
[3] https://www.nap.edu/catalog/19012/bey...
[4] http://researchbriefings.files.parlia...
[5] https://www.nice.org.uk/guidance/gid-...
[6] https://www.opendemocracy.net/en/seve...
[7] https://www.s4me.info/threads/the-nor...
[8] https://meassociation.org.uk/wp-conte...
[9] https://www.mdpi.com/2227-9032/9/4/45...
[10] https://meassociation.org.uk/wp-conte...

Severe ME Charity
25% ME Group
https://25megroup.org/

For Health Professionals

1hr Training module written by Nina Muirhead who appeared in the video
https://doctorswith.me/cpd-module-1hr...


Special Issue "ME/CFS – the Severely and Very Severely Affected"
https://www.mdpi.com/journal/healthca...

Credits
https://www.emerge.org.au
https://solvecfs.org
https://www.me-cvsvereniging.nl
http://superpooped.blogspot.com
https://spooniesophia.com
https://www.whitneydafoe.co