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

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More Support required for those with 'Invisible illnesses':

People who suffer from long-term Covid-19 and other ’invisible’ illnesses have spoken out about how the government needs to provide urgent support for them.

Health Minister David Ashford MBE has previously expressed that advice from the NHS on treatment for long Covid was ’bitty’, when asked in November 2020 about what was being done by the Department of Health and Social Care for giving clear advice.

He said: ’It’s not a case of we can treat everyone the same and put them on the same pathway.

’The simple fact is that with so many different things we’re seeing with this long Covid, every patient is going to have to be treated as unique and dealt with on an individual basis.’
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In 2018, previous Health Minister Kate Costain offered some hope for ME sufferers when funding was agreed by DHSC for ME services.

The DHSC told the Manx Independent regarding ME and chronic fatigue: ’Funding for a locum psychologist was agreed a couple of years ago and the individual commenced in post late 2019, but unfortunately left the island last year. He had begun to establish the service and provide support for some patients; the intention has been to fill this post but Covid restrictions have made recruitment to the island [in this area as in many others] very difficult.

’We are advertising for a permanent health liaison psychologist.’

Last Thursday, during a Covid media briefing, Dr Henrietta Ewart explained more about treatment for long Covid at Noble’s Hospital and how care for ME sufferers was being prioritised.

She said: ’There is a working group that is established, looking at pathways and services for long Covid and we’ve got a meeting coming up in the next week or two.

’There is very good guidance from the National Institute of Health and Clinical Excellence [in the UK], which will give us the blueprint to work from.
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http://www.iomtoday.co.im/article.cfm?id=61558&headline=More support required for those with 'invisible' illnesses&sectionIs=NEWS&searchyear=2021

a locum psychologisto_O:banghead:
 
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BBC Article
Isle of Man: Long Covid and chronic fatigue services planned for end of year
Interim services for Chronic Fatigue Syndrome (CFS) and long Covid patients will be set up by the end of the year, the Manx health department has said.

The department said resources would be reallocated while a business case for a permanent service was considered.

Currently there are no dedicated services on the island for those with CFS, which is also known as Myalgic Encephalomyelitis (ME), or long Covid.

Charity ME Support said it was "delighted" a timeframe had been set.

About 350 people on the island have either ME or CFS, while the number of people with long Covid has not been confirmed.
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https://www.bbc.co.uk/news/world-europe-isle-of-man-58994530

when will they stop using 'chronic fatigue':banghead:

eta: people can email IsleofMan@bbc.co.uk
 
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'Listening exercise' for people with Long Covid

Manx Care sessions taking place next week

People suffering from Long Covid on the Isle of Man are being urged to take part in a 'listening exercise'.

Manx Care is currently scoping a specialist service for people with it, and for those suffering from ME/Chronic Fatigue Syndrome, and a business case has been submitted to Treasury.

Workshops will be held next week which will be facilitated by an independent and impartial member of the government's learning and development team.
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https://www.manxradio.com/news/isle-of-man-news/listening-exercise-for-people-with-long-covid/
 
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Great to see heath care providers listening, and seemingly considering combining services for ME/CFS and Long Covid, rather than developing completely separate services.
Manx Care is requesting anyone with these conditions or caring for someone with these conditions register their interest via Sarah Morton at sarah.morton@gov.im. You can also submit your experiences in writing to this address. There is also the option of attending the consultation via Zoom – the link to the Zoom call and further information on what to expect at these sessions will be provided when you register your interest in attending.

People living with ME/CFS or Long Covid are encouraged to complete this questionnaire https://forms.office.com/r/LU1WdpTRHT prior to the sessions taking place, to ensure the voices of those with experience of these conditions are heard.
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Hopefully the relevant national patient charities will get in touch with the Isle of Man government also @Russell Fleming, @Action for M.E to offer their assistance.
There's the opportunity to create a service that can be an example of how to get things right. I still think the Isle of Man would be a great place to have a register of everyone with ME/CFS + Long Covid, and do epidemiological studies e.g. on illness progression.
 
It's possible to answer the survey without living on the Isle on Man - there is nothing saying you can't. There is a question at the end that asks which part of the island you live on - you can leave that blank and still submit a response. If you do that, then, if they want, the organisers can just look at the responses from people on the island. But I think people living away from the island can make a useful contribution to the consultation process.
 
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New service gives people ‘much-needed hope’
A charity that supports people with ME/CFS has said recent updates on the Manx Care integrated service with Long Covid gives its members ‘much-needed hope’.

Health Minister Lawrie Hooper told Tynwald on Tuesday that the ME/CFS and Long Covid service would be ‘up and running from July of this year’.

It cost the government in the region of £400,000 to create the service that is aimed to support clinicians across the care sector in delivering ‘informative advice as well as providing those dealing with post-viral symptoms a non-judgemental service’.

Mr Hooper described it as a service that ‘other services can learn from’ and Manx Care has appointed a dedicated service development lead to take forward the project ‘at pace’.
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https://www.iomtoday.co.im/news/health/new-service-gives-people-much-needed-hope-547904
 
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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.
 
rvallee said:
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.
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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.
There have been new guidelines for treating M.E. and CFS in the UK, with the health secretary there committing to supporting people with the conditions.

'In our discussions with the NHS we have held up the Island's development as a gold-standard example of how patients, politicians and healthcare providers can all work together to achieve a successful outcome for some of the most disabled people in society.'
Russell Flemming is from the UK charity ME Association:
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https://www.manxradio.com/news/isle...covid-support-held-up-as-gold-standard-in-uk/
 
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Chance to meet ME & Long Covid team
Those living with ME and Long Covid have a chance to meet those running the new service for patients with one of the two conditions.

Manx Care is holding a launch event for its recently-opened ME and Long Covid Service on Monday afternoon.

For years there have been calls for a service tailored to those with Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome.

The condition, which affects around 350 adults on the Isle of Man, has been compared to Long Covid, with more than 1,000 Manx patients thought to be living with the continuing effects of coronavirus.

In response, Manx Care recently put in place a clinical team to work with those suffering from either condition, with GPs able to refer patients over the age of 18 to the service.

Clinics are being held at Ramsey and District Cottage Hospital, Thie Rosien in Port Erin, Noble's Hospital and the Western Wellbeing Centre in Peel.

Next week's event at Keyll Darree at Noble's is a chance to meet the team and find out more about the support on offer.

Manx Care's Director of Operations, Oliver Radford said in a statement: "We've been open to ideas from those with lived experience, which has really pushed the service forward, and combining the ME/CFS service with that for Long Covid is a distinguishing factor compared with UK counterparts."

The event gets underway at 1pm on Monday 3 April, with formal presentations by members of the team and ME Support Isle of Man scheduled for between 2.30pm and 3.30pm, followed by a question and answer session.
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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/
 
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