United Kingdom: Isle of Man ME/CFS and Long Covid services (Manx, ME Support IOM)

Video transcript:
Announcer: ME Support (IOM) was established in 1988 by Barbara and Robin Proctor, parents of Ean Proctor, after their horrific experience on the Isle of Man.
[Video from Frontline, Channel 4]
Interviewer: At 12, Ean got ME and became paralyzed and mute. But because no abnormality showed on his tests, his doctors dismissed him as school phobic.

Ean: There was a knock at the door at it was the GP. He had two social workers with him and they were going to take me away to a place of safety.

Spoiler: Story may be upsetting to some

The female social worker told me that they would take me away because my parents were letting me die.

Interviewer: How were you treated when you got into hospital?

Ean: They used to race down the corridor with me in the wheelchair and suddenly stop to see if I'd react or anything. They even took me swimming and let me go under the water one time.

Interviewer: The theory was that he was faking his paralysis and would surely swim.

Ean: They let me go in the deep end and I was paralyzed, I couldn't speak, and I was scared, I didn't know what was going to happen to me. I didn't know if they were going to bring me back up or not. They also put me on a ghost train. I think the idea of that was to scare me into moving. I was totally distraught. I was crying all the time. I am very bitter about the way I was treated. Most of the doctors didn't really want to understand what the illness was about. They didn't really care how I was treated, they just wanted me to get better instantly.

Announcer: Heavy scrutiny inevitably followed, both on our island and across the water in the Palace of Westminster. For decades, this spotlight failed to translate into meaningful support for local families who were left to struggle on alone. Hope was offered in 2014, when the then Health Minister, and Directors of the DHSC agreed that an ME service was required. Progress was made with the appointment of a GP ME champion and a steering team to coordinate a new project.

But progress stalled and the role of GP ME champion was discontinued in 2015 due to a lack of funding and a lack of logistical support. In 2019, Craig Morris, Vice President of our charity, started an online petition to demonstrate public support for a new service. Craig and I shared a series of videos on social media documenting our personal experiences of the condition to promote the petition.

Chuck Morris: I think that the chances of recovery are much better if you get the right advice in the first six months.

Announcer: And the response was...moving. We received over two and a half thousand signatures to the petition on our small island. This was hard to ignore, and by October 2019, former Health Minister David Ashford had promised immediate improvements and a full service by April 2020.

David Ashford: This has been talked about for nine years now, and it's enough of talking about it. It's time to do it. And my challenge as Minister is to make sure that they actually start seeing change on the ground.

Chuck Morris: This deadline was missed. And the consequences would be grave.

Boris Johnson: From this evening, I must give the British people a very simple instruction. You must stay at home.

Chuck Morris: People with ME feared that the Covid outbreak in March 2020 would lead to an avalanche of ME cases. Sadly, these fears have been realized. By late summer of 2020, DHSC was still struggling to make progress and with the Island temporarily Covid free, we took the opportunity to set out what was required, the simple steps to implements an ME service that would benefit those with ME, and also those from the long Covid community. Regrettably, and not for the first time, the DHSC was unable to translate patient feedback and expertise into results. In May 2021, we resorted to an intense fortnight of advocacy.

And then, finally, after more than 30 years, the tide started to turn. Regular discussions between Manx Care and ME Support (IOM) have continued since then and we have worked to co-produce a new service. There was a collaborative approach behind the scenes, and in addition, the local media generated some helpful reminders of our cause. This brings us to the present day, and our co-prouduction efforts, along side Manx Care, have culminated in the opening of a new combined ME/CFS and long Covid service. The new team is passionate and enthusiastic and the new service is based on the latest guidance. It's important to remember that the new service will not cure patients. However, it's a huge step in the right direction, and one that has been 34 years in the making.

 

I'm very, very proud for the people of the Island of Man working together for so long to open this service. I'm proud that they created a clinic that has biomedical doctors improving care by listening to patient experience, and that recognizes the heavy overlap between ME and LC by merging them. They deserve praise for their leadership--they created a top-notch clinic, not in a big city like London or Manchester, but on a small island with a population barely larger than Youngstown, Ohio.

 

Do we know the current service has biomedical doctors or indeed many hours allocated for any sort of qualified doctors?

This relates to the past:

I think last time I heard it was headed by a psychologist?

 

Was I wrong to assume? It sounds like they know how to take care of PwME. But maybe their role is smaller than I thought? I'm sorry for getting it wrong.

 

Segment on North West Tonight

https://www.youtube.com/watch?v=pT_cdaDy2JY

 

https://twitter.com/user/status/1644090194721755138

 

@Adam pwme - thank you for all your videos so much appreciated. Lets me see the relevant bits easily and share with family and friends. It’s a hugely valuable resource. I’m in the North West and missed this last night.

 

Thanks Fizz Lou that's good to hear.

 

I imagine so with the close patient involvement.

 

even here they keep using 'chronic fatigue'. gold-standard? not good enough.

 

https://twitter.com/user/status/1651329437147824131

 

https://twitter.com/user/status/1651329441627353089

 

Merged thread

BBC - Long Covid support offers light at the end of the tunnel, patients says

article

quotes:

Debbie Dixon from Foxdale first contracted the virus in 2022 and said she "just never felt well after that".

But she said support from Manx Care's dedicated services had given her hope she would make a full recovery.

The services, which are also offered to those with Chronic Fatigue Syndrome (CFS), were rolled out a year ago.

Manx Care estimates more than 1,000 people on the island have long Covid and about 350 people have CFS, also known as Myalgic Encephalomyelitis (ME).

....

"Once I got access and had a one-to-one with a professional, it's almost validation you've been sick," she said.

"They teach you how to slowly exercise and rest, they teach you that you need to stop in between things."

 

Is this really about pacing or GET?

 

that's great to hear!

 

That's good. I was there like six or seven years ago--can't remember now--and met with various folks.