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

Merged thread
More Support required for those with 'Invisible illnesses':

http://www.iomtoday.co.im/article.cfm?id=61558&headline=More support required for those with 'invisible' illnesses&sectionIs=NEWS&searchyear=2021

a locum psychologist

 

Tynwald Douglas IOM 19th May 2021

Motion to hear witnesses
–
General Debate on
Myalgic Encephalomyelitis
pdf:
https://www.tynwald.org.im/business/hansard/20002020/t210519 RHB.pdf

 

Merged thread
BBC Article
Isle of Man: Long Covid and chronic fatigue services planned for end of year

https://www.bbc.co.uk/news/world-europe-isle-of-man-58994530

when will they stop using 'chronic fatigue'

eta: people can email IsleofMan@bbc.co.uk

 

https://twitter.com/user/status/1451184990444609540

 

Merged thread
'Listening exercise' for people with Long Covid

https://www.manxradio.com/news/isle-of-man-news/listening-exercise-for-people-with-long-covid/

 

Two consultations or ‘listening events’ were held in February on the subjects of Myalgia Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) and Long Covid, which were well attended.

The next two listening events will be held on Tuesday, March 29, between 1pm-3pm on the subject of Long Covid, and on Wednesday, March 30, between 4pm-6pm on the subject of ME/CFS.

https://www.iomtoday.co.im/news/health/views-sought-to-shape-mecfs-and-long-covid-service-515367

 

They are considering calling it a PPPS service?? What! Does this mean yet again funding is under a mental health budget/CCG, eg a health psychology service? Without doctors? I woukd hate for others to go through that.

 

Merged thread
New service gives people ‘much-needed hope’

https://www.iomtoday.co.im/news/health/new-service-gives-people-much-needed-hope-547904

 

It'd be really great whenever media talk about something "giving hope" to people, that it would actually check, rather than simply publish a quote from some bureaucrat who is simply saying this because it sounds nice. Although, to be fair, that's way more work than just stenography.

Crumbs don't give people hope. Not after so many times having been burned that the first crew crumbs is all there is, in fact they're the same crumbs re-used every time. There are so few you can even recognize them by their shape.

Not that this is necessarily useless, I don't know, but to talk of something so trivial giving hope to people is simply lying, it shows that so little is done, that it's not changing, and this is what saps people of hope: actions, or the lack thereof. Actually deliver something and credit can be given. Until then it's just the same old false promises.

 

Yep - is 'mercy' more appropriate?

Having said that I think that those who have been involved with developing this service in particular seem to have done better than most. I do agree that 'hope' just because someone will not gaslight you, and will write letters confirming you have a condition and what it is could only be used for a service for ME because there wasn't even that before (as a basic). Hope, that your life will actually work, rather than - just when you've run out of road someone acknowledges you are ill and gives the bare minimum - are entirely different things, so that ambiguous phrase is misleading.

 

Although this is largely about the new service on the Isle Of Man there is a brief interview with Russell Fleming about the NICE guidelines and the ME/CFS services in the UK and Long Covid and Sajid Javids statement.

https://www.manxradio.com/news/isle...covid-support-held-up-as-gold-standard-in-uk/

 

In case anyone wants to search here, the correct spelling is @Russell Fleming.

 

Isle of Man Government website:
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) - resources

https://www.gov.im/categories/healt...tis-chronic-fatigue-syndrome-mecfs-resources/

not sure why BACMEs dysregulation model is linked to? (although I suppose it is preferable to their previous fear/avoidance de-conditioning CBT model)

 

Chance to meet ME & Long Covid team

https://www.manxradio.com/news/isle-of-man-news/chance-to-meet-me-and-long-covid-team/

 

Island's ME/CFS and Long Covid service officially launched

ME Association in UK describes effort as virtually 'unparalleled'

ME Support Isle of Man says it’s ‘proud’ to be working alongside Manx Care to deliver a new ME, Chronic Fatigue Syndrome and Long Covid service.

It was officially launched today (3 April).

The charity says its ‘persistence over many decades’ will help transform the advice given to hundreds of residents who suffer with the conditions.

Chair Juan Corlett said : “We are very grateful to local team and UK based experts for their input towards the service.

“While it is important to remember that the new service will not cure patients it does represent a huge step in the right direction and one that has been over 30 years in the making since ME Support (IOM) was started by Barbara and Robin Proctor.

“Severe cases can leave individuals unable to work for a long period and in some cases it is doubtful if they will ever be able to return to meaningful work.

“The estimated average annual cost of social security benefits and lost tax and NI revenue of each severe case of ME or long Covid is in the region of £20,000.

“The figure will be even higher when including the economic impact of family members who become carers, the cost health and social care and the wider ripple effects to society.”

https://www.manxradio.com/news/isle...s-and-long-covid-service-officially-launched/

 

A breakthrough more than 30 years in the making

Today (3rd April) Manx Care's ME/CFS and Long COVID Service was officially launched

It has taken a global pandemic to awaken the world to the realities of post-viral illnesses. Has our Island stolen a march in this new dawn?

A brave group of volunteers have been the catalyst for a project that promises to transform the advice given to hundreds on our Island and provide inspiration to others further afield.

Those debilitated by ME/CFS had faced stigma and disbelief for decades; misunderstood by society, failed by medics and surviving on threadbare support. In 1988, when questionable practices by medical professionals were at their height a Manx family bravely formed ME Support (IOM).

ME/CFS is a complex, fluctuating neurological & immune condition that affects multiple body systems.

In April 2021 a new healthcare body, Manx Care, brought a new a willingness to listen.

Two local men with strikingly similar stories wanted to be heard; both active sportsmen with burgeoning careers struck down in their prime and left housebound for years. From barely able to communicate and prisoners inside their own bodies for months at a time they were gradually regaining their capabilities, but still very much disabled.

Craig Morris and Juan Corlett were advocating for change before the pandemic and then dedicated themselves unequivocally to the cause when Covid caused the scale of the problem to erupt.

Long COVID was recognised as a threat at the onset of the pandemic by those who had experienced these post-viral illnesses first hand. Research papers increasingly evidence the similarities between ME/CFS and Long COVID.

Juan, Chair of ME Support (IOM), explains that “preventing others being struck down by post-viral illness like we have is a powerful motivator. That feeling grew massively with the pandemic. I was only strong enough to speak for 10 minutes, but we were so desperate to get the politicians on board.”

Craig and Juan introduced Manx Care to numerous field-leading experts whose advice has shaped developments on the Isle of Man.

Persistence, constructive dialogue with Manx Care and patient engagement -symbolised by bespoke ‘Listening Events’ – have been the foundations of success.

https://fb.watch/jHNgZy3dBm/