Updated: What is ME? Video

Moderator note:
A previous version of this video, now no longer available, was discussed here.
https://www.s4me.info/threads/new-video-what-is-me.11849/

ETA: Apologies, link was wrong, updated 08/02/2020 with correct link for old thread.

https://www.youtube.com/watch?v=VKPdgz612nU

 

Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome (CFS or ME/CFS) is a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.

Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care [1]. People with ME have a lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Rheumatoid arthritis [2]. ME is not taught in most medical schools despite it affecting 15-30 million worldwide [1] [3] [4].

The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [5]. Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism [6].

Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology - The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise [7]. NICE is currently updating its guidance, which is expected in October 2020 [8]. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [9].

Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [10]. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis” [11]. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management” [12].

REFERENCES
[1] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
[2] https://www.meaction.net/2015/08/01/me-patients-have-among-the-poorest-quality-of-life/
[3] http://www.hrpub.org/download/20131107/UJPH4-17600991.pdf
[4] https://www.meaction.net/about/what-is-me/
[5] https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
[6] http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
[7] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
[8] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
[9] https://www.meassociation.org.uk/20...recommended-treatments-for-mecfs-11-july-2017
[10] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[11] https://www.mdpi.com/2075-4418/9/4/124/htm
[12] https://www.meassociation.org.uk/wp...No-decisions-about-me-without-me-30.05.15.pdf

 

Thanks Adam, another excelllent video.

 

@Adam pwme

Wonderful work, thank you so very much!

 

Thank you! @DokaGirl @Trish @MEMarge

 

Thanks to @JohnTheJack and @Michiel Tack for their help

 

Well done Adam, the video looks great - very professional.

 

great video still with the haunting music from mass effect a favourite game that helped distract me for quite some time . thank you.

 

Well done, Adam. Clear, concise, comprehensive and classy. I'm talking about the video, of course.

 

Ha! Thanks Graham.

 

Subtitles now available in English and Dutch.

Instructions for ipad/android/computer:

1) Turn captions on
2) Select caption language

https://support.google.com/youtube/answer/100078?co=GENIE.Platform=Desktop&hl=en

 

Subtitles now in French too

 

Thanks Hutan

I've been keeping a lookout for clips that talk about the guidelines but I've not seen anything yet. Finding content is always tricky.

I was thinking about doing one specifically on the guidelines too. Will have a think, I guess I would need to work out what to call a new one, maybe What is ME (2021).

 

Thanks appreciated. Glad you find it useful.

 

Hi @Adam pwme
I have been searching for a short video to share with people newly diagnosed with ME. One that explains what is known about the pathophysiology currently, the IOM 2015 (NICE?) symptoms and discuss management & treatment i.e. pacing, & possible treatments for individual symptoms.

Your What is ME/CFS video is an obvious candidate but is intended for a different audience and the content and drama reflects that.
Do you think you would ever do a version for pwME that has moderate symptoms?

I am so grateful for the videos you have produced to date, and have shared those widely. I understand that what I am after may not be in your interest area or doable given your ME. So please don't feel any pressure to consider this.

 

Hi @RoseE,

Thanks for thinking of me, i'm not sure that's something that I would do to be honest but will bear it in mind. I'm currently updating the What is ME video to include the new NICE GL though, I'm not sure when it will be ready.

Have you considered the ME Action video for doctors?

https://www.youtube.com/watch?v=RC9TjgE_PlU