New Video Severe and Very Severe ME/CFS

https://www.youtube.com/watch?v=CTxwlf7LSrA

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].

References
[1] https://meassociation.org.uk/about-what-is-mecfs/symptoms-testing-assessment/
[2] https://www.fda.gov/files/about%20fda/published/The-Voice-of-the-Patient-Report--Chronic-Fatigue-Syndrome-and-Myalgic-Encephalomyelitis.pdf
[3] https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness
[4] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
[5] https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
[6] https://www.opendemocracy.net/en/se...26-years-on-why-is-it-still-poorly-understood
[7] https://www.s4me.info/threads/the-norwegian-me-associations-report-on-severe-me.10140/
[8] https://meassociation.org.uk/wp-content/uploads/Relapses-exacerbations-etc.pdf
[9] https://www.mdpi.com/2227-9032/9/4/459/htm
[10] https://meassociation.org.uk/wp-content/uploads/colby_j.pdf

 

Thank you.

Great work, well done

 

Thanks Mango

 

An excellent informative video.

 

Thanks Peter

 

liked and shared the whole series you have made needs a much wider audience. i for one am very grateful for all the work you and your team have put into this .thank you .

 

Thanks for this on this important day, Just posted by a friend in Suffolk
https://www.mdpi.com/2227-9032/9/7/919/htm

The last 8 years A has suffered severe ME
Today is severe ME day and I want to pay tribute to my son an amazing person hidden.

There has been no need for him to suffer stigma but through Ignorance arrogance keeps his illness hidden. Research is there and does have some answers but it has been ignored. Allowing suffering is wrong.
For anyone who knows me I do not take lightly ignorance or arrogance so I started at the top for change.
Change is coming

NICE guidelines are going to be released on the 18th and I am proud of the work I and many more have done. They are a start to the end to the abuse our young people have suffered over decades.

Special Education Needs are reconsidering ME
Social care is under Reform
The Family Courts are under reform and are being made to be more transparent
Where did I get my inspiration come from A..... Because each day for him is Groundhog Day. Not one day of freedom of just doing what he enjoys wants or what makes him happy. Each and every day he teaches me resilience and hope and by fluffy Ducks this will change.

They will make sure he is treated with the respect he deserves and the research and treatment that will change ground hog day into a life to be lived.

 

Thanks for sharing Nellie

 

I only saw this. Thanks much appreciated. It's just me though I wish I had a team

 

Not trying to discourage you (It was a good video overall) but where does the 88 deaths figure come from (@4:10 in the video)?

This MEPedia article (https://me-pedia.org/wiki/List_of_d...encephalomyelitis_or_chronic_fatigue_syndrome) only lists 5.

 

https://me-pedia.org/wiki/Causes_of_death

This MEPedia page says:

In England and Wales, between 2001 and 2016, 88 death certificates stated that the death was either partly or fully caused by myalgic encephalomyelitis/chronic fatigue syndrome.

It gets it from the ONS

https://www.ons.gov.uk/peoplepopula...isdeathsregisteredinenglandandwales2001to2016

 

The last line gave identity away- she is a brilliant advocate