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

Andy · May 26, 2022

Merged thread
David Tuller seems to be on a tour of the UK

A public health activist from the University of Berkeley, California, has spoken with the Health Minister about improving ME services.

Dr David Tuller was invited to join a campaign by ME Support IOM to help spread awareness of the illness and improve the services available to sufferers on the island.

Myalgic Encephalomyelitis (ME) is a chronic illness that affects about 350 people on the island. Sufferers experience dysfunction to their neurological and immune systems, which can drastically impact their energy levels and leave them bedridden for weeks.

The Department of Health and Social Care has worked with the support group to create a business case for a more appropriate service to be considered.
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http://www.iomtoday.co.im/article.cfm?id=37206

Samuel · Nov 27, 2017

weeks?

Esther12 · Nov 27, 2017

That does read like a rather confused article. LOL at 'weeks'.

TiredSam · Nov 27, 2017

His research proved that PACE, a treatment that involves intensive exercise and cognitive behaviour therapy, creates further problems for sufferers and that a large amount of rest is essential.
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Nice. SMC obviously doesn't bother with the Isle of Man.

John Mac · May 26, 2022

Merged thread

Isle of Man patients with the chronic illness ME will get the support they need, the health minister said.

David Ashford MHK made the pledge after a petition calling for Tynwald to investigate the current provision attracted more than 1,500 signatures.

The petition was set up by former teacher Craig Morris, who developed chronic fatigue syndrome - or ME - nine years ago.

Support services will be developed over the next 12 months, said Mr Ashford.

Myalgic encephalomyelitis (ME) is a long-term, fluctuating condition characterised by extreme tiredness.

About 350 people on the island live with the condition but while specialist services are widely available in England, there are none offered by the Manx NHS.
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https://www.bbc.co.uk/news/world-europe-isle-of-man-48065779

April · Apr 27, 2019

No doubt they will consult the NICE guidelines and come up with the usual CBT/GET. Better off without the 'specialist services' that we have on the mainland.

Hutan · Apr 27, 2019

The Isle of Man would be a perfect place to have a registry of people with ME. With a population of about 85,000, it's big enough to have a good sample of patients, but small enough that any person with ME can be identified, invited to join, and periodically surveyed.

Good luck to Craig Morris; I hope he has things well in hand as yes, when it comes to "specialist services" it's a matter of being careful what you wish for.

ME/CFS Skeptic · Apr 27, 2019

Hutan said: ↑

The Isle of Man would be a perfect place to have a registry of people with ME. With a population of about 85,000, it's big enough to have a good sample of patients, but small enough that any person with ME can be identified, invited to join, and periodically surveyed.
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That sounds like a great idea.

John Mac · Apr 27, 2019

April said: ↑

No doubt they will consult the NICE guidelines and come up with the usual CBT/GET. Better off without the 'specialist services' that we have on the mainland.
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That is a danger but as @Hutan points out with such a small population at least the individuals making the decision would be known and hopefully accountable for their decision, unlike the UK.

NelliePledge · Apr 27, 2019

Hopefully they are just as likely to be influenced by what’s happening in NI with the work that’s going on there to change things as the GB approach. The petition was good and inevitably the BBC coverage seems to manage to twist it towards the BPS status quo

MeSci · Apr 27, 2019

There's also this thread:

https://www.s4me.info/threads/petition-for-island-m-e-service-isle-of-man-gains-traction.9162/

TiredSam · Apr 28, 2019

NelliePledge said: ↑

BPS status quo
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I misread that as "BPS status ego".

I'm misreading things more and more lately, with odd results.

NelliePledge · Apr 28, 2019

TiredSam said: ↑

I misread that as "BPS status ego".

I'm misreading things more and more lately, with odd results.
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Well it is a very apt misreading. Innnit

Wonko · Apr 28, 2019

There is clearly something wrong with me.

For some reason whenever I come across this thread the idea of the IoM being made into an internment camp for PwME goes through my head.

Now I know this probably isn't rational, that the property values and availability of helicopters on the IoM are too high.

But it still does, some part of this story is alarming to part of me and I don't know what.

Trish · Apr 28, 2019

Myalgic encephalomyelitis (ME) is a long-term, fluctuating condition characterised by extreme tiredness.
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I've seen this several times recently. Where has it come from? It's nonsense.

NelliePledge · Apr 28, 2019

Wonko said: ↑

There is clearly something wrong with me.

For some reason whenever I come across this thread the idea of the IoM being made into an internment camp for PwME goes through my head.

Now I know this probably isn't rational, that the property values and availability of helicopters on the IoM are too high.

But it still does, some part of this story is alarming to part of me and I don't know what.
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well they did have a camp for “enemy aliens” using some of the hotels on the seafront in Douglas in the 2nd world war. I don’t want to get into politics so I will just say the likelihood of that idea really happening is probably pretty slim @Wonko but we live in strange times.

ETA at least some of us would get to chat in person in between sewing mailbags

rvallee · Apr 28, 2019

Trish said: ↑

I've seen this several times recently. Where has it come from? It's nonsense.
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Lloyd? That's how he defines it anyway. Anyway, proponents always cherry-pick to align with their beliefs so the origin doesn't matter all that much.

Sly Saint · May 26, 2022

Merged thread

https://www.youtube.com/watch?v=bXEeRDo12JQ

Member for Rushen (Mr Speaker) to ask the Minister for Health and Social Care – If he will provide an update regarding the provision of a Chronic Fatigue Syndrome and Myalgic Encephalomyelitis service on the Island? Isle of Man TV channel - produced by Paul Moulton for PMC-TV

eta: Youtube generated text.

my class the Minister for Health social
care he'll provide an update regarding
the provision of a chronic fatigue
syndrome and myalgic encephalomyelitis
service on the island minister to reply
Thank You mr. president
the speaker said that very well without
even a pause mr. president in regards to
the provision of CFS /oe pathway chronic
pain pathway and health liaison
psychology services an interim measures
being put in place with the use of locum
appointments to provide a pilot service
to gather sufficient data which will
determine the future service provision
this interim arrangement is due to start
in November this year with the
appointment of a locum consultant
neuropsychologist as well as sourcing
additional relevant expertise within the
health liaison profession data on demand
at the moment is obviously not readily
available and we anticipate the pilot
will raise awareness for us to then
ascertain a more accurate level of need
so that we can Thank You mr. president
what great news is of course to be
welcome that there'll be progress within
a month or so and has the minister met
with users the potential users of the
service and can the minister assess
basically what the capacity of caseload
will be for this pilot in the meantime
thank you Thank You mr. president I have
met with the use of services I've met
with the charity in fact and their
representatives where we had a very very
positive meeting not that long ago I'm
talking about the way the service needs
to develop the problem with cmcs CFS /ma
is it's unique to the individual no two
people are necessarily alike so what
we've got to do is we've got to design a
service that is robust enough to take
that into account
there's no point as I think I've said
before in this honorable Court in having
a service that just tries to put people
in boxes it's not gonna work so in terms
of demand like I say it's a difficult
one for the pilot because we don't know
what the demand is going to be there
will be people who may well have just
given up over the years of trying to
find any form of help that will come
forward now and say Luke I'm still in
this predicament I've still got this
problem
I want to be assessed and helped so that
is the whole point of the pilot is to
collect the data so that by the time we
get to the end of this financial year
we'll be able to build a robust service
around that and we'll have more of an
idea of what help we need and what level
of help is required for the individuals
concerned about requests and misses
Becraft Thank You mr. president would
they administer statewide
already getting an interim service now
and why is only just recently met with
the charities because it's it's an awful
long time since the business case was
approved which is put forward to
Treasury and approved when I was
Minister I had been sucked over two and
a half years it's quite a long time and
also how much of the original 90,000
that was budgeted for for 1893 for 1718
how much of that has been spent to date
reply sir thank you thank you very much
mr. president just for clarity I've been
in post on my maths 20 months my first
contact with the charity I think if I
recall correctly I was in conversation
with members of them from about two
weeks after I started in post and have
been in continuous contact with them
since including face to face meeting as
well the service has taken a while to
get off the ground the humble man for
Douglas South is quite correct because
we've needed to make sure that it's
delivered properly because like I say
the service we're designing is not just
a one size fits all it's not like design
on the blog clinic we've deliberately
gone or moved away from what is the old
fashioned way in my view of treating ma
of just referring them to a psychologist
specialist and what we want is a suite
of treatments that suit the individual
I've got a constituent for instance
who's been - who's been to the GP and
being seen by consultants about where me
and he's just been told to exercise and
do various exercises which isn't
suitable for him it's actually making
him worse so that's been the problem
it's been around design in the service
so this isn't an interim service mr.
president this is the start of the
service and ensuring that we deliver on
demands that people require and I
actually think it's a very good news
story that we're going to be offering
there's to the people of the island this
is the speaker thank you as the minister
quite rightly says and Emmy and CFS that
that there's no one-size-fits-all and so
I'm intrigued as to what them in how the
ministers gone out to advertise for a
locum for that position what what are
the particular skills in terms of the
service that's going to be able to be
provided as the minister got out and
looked for in that individual thank you
thank you thank you very much mr.
president
well this is one of the reasons why I
said locums because we're going to be
people with different specialities and
different understandings we can't do mr.
speaker is quite correct
you couldn't just get one consultant in
and that's the thing about delivering
the service it's making sure we've got
the mix of medical professionals to be
able to adapt that if someone comes in
with something slightly different for
someone else
there is someone appropriate we can
refer to that's the old-fashioned way of
treating MA is just to have a
neuropsychologist and look and watch out
and try and treat them we are building a
service where we can refer people in to
other areas to be treated depending upon
what best suits them the plumeria mrs.
Becraft yes thank you mr. president all
the chemi in CFS could I ask the
minister I think he omitted then to give
me a response to Mike I think it was my
final question when I asked how much of
the original 90,000 has already been
spent Ashford oh thank you mr. president
in terms of the development of service
my understanding is none of the 90,000
has been spent the funds will be
actually being used to help form these
posts
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eta2 see also article by BBC
https://www.bbc.co.uk/news/world-europe-isle-of-man-50059949?intlink_from_url=&

MeSci · Oct 16, 2019

Not sure that a "neuropsychologist" is appropriate.

Sly Saint · May 26, 2022

Merged thread

A Manx Radio reporter has produced an excellent 25-minute podcast on the campaign for a specialist service for people with ME/CFS on the Isle on Man.

Ewan Gawne, the radio station’s deputy news editor, featured relaxed chat with three guests on the podcast – broadcast on his ‘Agenda’ politics show this evening.

His two main guests were surfing coach Dave Wilson (who went down with covid in March) and Craig Morris, from Isle of Man ME Support. Both praised the support they had received from the ME Association.

The podcast can be listened to at any time HERE.
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full article
https://meassociation.org.uk/2020/1...-for-specialist-me-cfs-service-on-the-island/

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