Stop Ignoring ME Video

https://www.youtube.com/watch?v=_SinqgOv4aI

ME is one of the most misunderstood diseases. 1 in 5 parents face child protection proceedings, patients have been sectioned and abused, NHS treatments make over 50% of patients worse, biomedical research has been pitiful. A global health scandal that has been ignored for over 30 years.

ME has a lower quality of life than HIV/AIDS, Stroke, Parkinsons, Multiple Sclerosis [1], but is one of the most misunderstood diseases. 80% of doctors think its psychosomatic [2]. Misunderstanding has led to 1 in 5 parents face child protection proceedings [3]. A recent example is an April 2019 iNews article where Georgia Whyard's teachers said she had 'school phobia' despite having an official diagnosis of myalgic encephalomyelitis [4]. Misunderstanding has led to patients being sectioned. In 2003 police forced entry into Sophia Mirza's mother's home, sectioned, and forced Sophia to a mental hospital. After being released Sophia had severely deteriorated and later died. An independent Neuropathologist found Sophia's spine contained massive infection and Sophia was the first patient to have ME listed as her cause of death [5]. Misunderstanding has led to abuse, Ean Proctor was removed from his home against his parents' wishes and hospitalized under a "Place of Safety Order." While in the hospital his health deteriorated as he was subjected to inhumane treatments: being placed into a therapy pool to force him to use his arms to swim, although he was unable to and would sink underwater; [6]

Many ME/CFS patients have been harmed by Graded Exercise Therapy. Over 50% of patients consistently report a worsening of their condition in an analysis of 18000 patients from 10 surveys from multiple countries [7]. Many have been made permanently disabled.

The PACE Trial has been widely discredited [8] Over 100 scientists and over 80 international charities (Nearly every one) signed an open letter asking for the trial to be independently reanalysed [9]. Former science teacher Carol Monaghan MP described PACE as "one of the greatest medical scandals of the 21st century" and said "As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community"

Over 30 MPs have signed up to the MAIMES Campaign calling for an investigation into The PACE Trial [10]. ME receives a disproportionally small amount of UK research funding given the prevalence of the condition. Despite the disease burden, the level of research spend per ME/CFS
patient is considerably lower than in other illnesses. MS, for example, receives approximately 20 times more funding worldwide despite 2.5 times less prevalent than ME [11].


[1] https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
[2] https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
[3] https://www.actionforme.org.uk/uploads/pdfs/families-facing-false-accusations-survey-results.pdf
[4] https://inews.co.uk/news/real-life/...-been-told-shes-not-sick-enough-for-benefits/
[5] https://me-pedia.org/wiki/Sophia_Mirza
[6] https://me-pedia.org/wiki/Ean_Proctor
[7] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[8] https://www.me-pedia.org/wiki/PACE_trial
[9] http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/
[10] https://www.drmyhill.co.uk/wiki/MAIMES_SIMPLIFIED
[11] https://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

 

Transcript

ME has a lower quality of life than HIV/AIDS, Stroke, Parkinsons, Multiple Sclerosis (slide)

ME patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (slide)

ME is one of the most misunderstood diseases (slide)

The WHO classified ME as neurological in 1969 but 80% of doctors think its psychosomatic (slide)

Armando Lannucci Sketch Show (clip)
I have for the past two years suffered from ME but it's more correctly called chronic fatigue syndrome. Yeah well we all get tired!

The WHO classified ME as neurological in 1969 but 80% of doctors think ME is psychosomatic (slide)

ME Action Conference audience member (clip)
But my goodness these doctors need reeducating they're not listening, they're still not listening and I really don't know what you can do.

Misunderstanding causes 1 in 5 parents to face child protection proceedings. Action for ME survey. (slide)

Stephen Pound MP (clip)
What happens to that child? you very often find they are referred to social services, very very often, child protection referrals are made because a child is missing school and imagine the impact on that child, on that family.

Georgia was branded 'school phobic' due to poor attendance. iNews 5th April 2019. (slide)

Teen housebound by ME threatened with fine by school for being 'truant' - now benefits assessor says she's not in enough pain (slide)

Misunderstanding has led to patients being sectioned (slide)

Meridian News (clip)
Doctors decided she wasn't improving so the decision was made to section her. She was sent to a hospital for the mentally ill, a decision her family believed cost her her life.

Misunderstanding has led to abuse from health care professionals (slide)

ME TV documentary (clip)
The theory was that he was faking his paralysis and would surely swim. They let me go in the deep end I was paralyzed I couldn't speak I was scared I didn't know what was going to happen me if they were gonna bring me back up.

Over 80 Charities have rejected treatments recommended by the NHS which make 50% of patients worse. Analysis of 18000 patients from multiple surveys. (slide)

Scottish Parliamentary Petition Committee (clip)
I started the clinic being able to walk about four minutes each day and I ended and I needed a wheelchair.

The research these treatments are based on has been rejected by all the major US health
agencies (slide)

and is taught in universities and textbooks as an example of how not to conduct a clinical trial (slide)

Dr Phillip Whitford MP (clip)
They lowered their defined targets simply because it was failing. Some people got worse and were still classified as a success.

Over 35 MPs want a public inquiry and over 100 well respected scientists want an independent review (slide)

Carol Monaghan MP (clip)
When the full details of the trial become known this will be put down as one of the biggest medical scandals of the 21st century.

ME receives 20x less research funding than MS despite having 2.5x as many patients (slide)

Sir Edward Davey MP (clip)
The calls there have been over two decades or more for research in this country and the fact that those calls have been ignored, I find that quite disturbing.

For over 30 years the community have been trying to educate doctors, politicians and the public asking for action (slide)

Including the golden girls (slide)

Golden Girls (clip)
You made me feel crazy like like I had made it all up. You dismissed me!

This is a scandal that's gone on far too long. Stop ignoring ME. (slide)

 

Awesome! Short video is one of the best formats we have, it can carry so much more information than any other medium.

 

I wonder if you could get the charities to share this on their social media pages?

 

Powerful video. Well done @Adam pwme !

 

Thanks @Adam pwme . this is a very powerful advocacy resource.

we need to get it beyond the ME sounding baord that is sufferers and their families and into mainstream .How should it best be used? can it be projected onto buildings for ME awareness on 11th?

 

Brilliant video well done. It's the best advocacy video i've ever watched.

 

Ive just emailed a few of the charities. Hopefully they will share it.

 

Thanks. Agreed, the video was aimed at non ME people, I'm not sure the best way to get it out there, I've emailed a few charities and I'm going to share it round a few groups, I hope that if pwme share it, their friends might watch it. Other options are targeting people with large profiles who are sympathetic to me or Facebook/twitter ads.

Maybe S4ME could share it on facebook/twitter?

 

Hi @Adam pwme


I thought it was really good.

Just a tiny niggle I thought the golden girls clip at the end was a bit disconnected to the theme/tone set (went from stating scandalous facts and unfairness to quite a personal ...’don’t be mean to me” message. I also think the clip is a bit dated and jars a bit? It’s only a small thing and I’m sure others will disagree.

I think Facebook is probably the best vehicle to spread it around. Perhaps ask each person to send it to 5 people they know without ME like a chain letter?

It would also be good to have links to a way of donating to something (scientific research a charity or advocacy organisation) or writing to an MP (donation should be easier). A call to action to go with the post and perhaps top and tail the video content as well. That way if people share it but don’t watch it they can donate and if they do watch it you’ve got another opportunity to encourage them to do something.

Twitter as well won’t harm but it’s likely to have less impact than Facebook.

Good luck with it. I’ll try and share with my 5 (via email since I don’t have a Facebook account)...Mrs Sloth does do Facebook so ill ask her to circulate as well.

 

Thanks, I was trying to convey how long people have been asking for action with a bit of humour, and the age of the clip kind of says that but see what you mean.

Ive already shared it, but will bare it in mind for next time

There are links charities in the youtube description to get involved, but agree this should be more prominent.

Thanks for sharing.

 

Didn't see this until just now, have shared.

 

Thanks Andy!

 

Shared amongst Facebook closed groups with suggestion that Glasgow venue could use it on 11th ( George Square so big footfall potential)

How much would it cost to screen on OMF Times Square pitch ?

 

took me 3mins to find share symbol its one of those days liked and shared .

 

Great video! Will share it.

 

I missed this when it was first posted. Truly excellent work!