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Sly Saint

Senior Member (Voting Rights)
See also News from Scotland
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Moved from the News from the MEA thread.


not news from MEA as such; but anyone know about this person https://www.wandabelisle.com/
Author, Registered Health Coach, mum & 5th generation female entrepreneur recovering from Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) triggered by an injury and post-viral illness.
according to her website "
FEATURED on upload_2022-9-8_11-17-24.png
 
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New M.E Support Group @ Dunston, Gateshead


A lovely group just starting for people affected by: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Post Viral Fatigue syndrome or Fibromyaligia Syndrome. Every Wednesday from 1pm with an informal art club each week and a support session on the 1st Wednesday of each month. Our monthly support session is a small informal gathering to allow members to: - Share information about local services - Make new friends &share personal experiences - Relieving isolation - To have a nice cuppa and a calm relaxing chat. Coffee & cakes at all sessions Weekly Art Club where we provide the art supplies, very informal with a variety of possibilities. Art not your thing? Your more than welcome to come along anyway for a chat and a cuppa! All welcome. Group is run by volunteers who also have Myalgic Encephalomyelitis and we promote a friendly and open space for all!
Areas Covered
Dunston
Gateshead Wide
Teams
Contact Person
Pauline Dillon

Email
admin@dunstondrop-in.org.uk
Organisation Address
Dunston Drop-In CIO
Unit 2,
Clockmill Road
Dunston
NE8 2QX
United Kingdom

(I don't know any more about this group)
 
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I had a look at her website and read this page:
https://www.wandabelisle.com/blog/chronic-fatigue-syndrome-mecfs-what-worked
which describes what worked and what didn't work for her. It seems pretty sensible to me as one person's experience.

The electrolyte drink sounds quite interesting, D-ribose often gets thrown in (does nothing for me) but 5g of L-Glutamine is quite a bit and this is twice a day, that will have an impact. Since the ME/CFS body appears to run on this protein for energy I can imagine that might very well help.

Another individual set back and hurt by GET, its a sad repeated story at this point.
 
Why, if someone has truly had ME, would they not be offering their information for free for everyone to read? Most people who have found something that helps with their particular medical condition usually are shouting it from the rooftop trying to get everyone to listen to them. They aren't writing books about it and charging you for the information.
 
I had a look at her website and read this page:
https://www.wandabelisle.com/blog/chronic-fatigue-syndrome-mecfs-what-worked
which describes what worked and what didn't work for her. It seems pretty sensible to me as one person's experience.
Not too keen on the stock image of a model in bed:
https://www.istockphoto.com/de/foto/foto-einer-frau-die-aufwacht-gm1257805561-368739078

Although I must grudgingly admit I liked her video on toxic positivity:

https://www.instagram.com/reel/Ch2b5GRJ0ST/embed/?autoplay=1
 
Moved post

Today Woman's Hour Radio 4


10.30ish Arrogance in doctors and mother blame……Cultural issues….

Gina CYP Consultant comment… 'Arrogance leads to death…..'


https://www.bbc.co.uk/programmes/p0d514ry


Today Woman's Hour Radio 4Exclusive: My 13-year-old daughter’s death was preventable. Here’s why I’m speaking out
Merope Mills describes her anger at her daughter Martha's preventable death in hospital.

loss of "relationship medicine"... patient safety....at risk with loss of continuity of care...
 
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WAMES WordPress Volunteer for the Welsh Association of ME and CFS Support


This role offers the opportunity to support the work of WAMES, the Welsh charity which represents and supports people affected by the neurological condition of Myalgic Encephalomyelitis (ME) - sometimes called ME/CFS.

For those experiencing ME, their carers and families – approximately 13,000 families in Wales - we provide vital support and information services which can enhance their quality of life. We also campaign to change attitudes and misunderstandings about the condition and improve services. We expect the need for our support to increase as some people with long COVID can develop ME.

A WordPress volunteer would be involved with supporting and developing our 2 websites (Welsh and English) which also hosts a blog, poll and gallery.

You would be based at home, but working with, and responsible to, the small Communications Team.

Activities could include one or more of the following:

•keeping content up to date
•troubleshoot technical issues
•help us to improve functionality to communicate more effectively about ME and WAMES to the relevant target communities in Wales (including young people and adults with ME, carers & family, professionals with an interest in ME)
•improve the design

WAMES will: • organise induction & suitable training • pay agreed expenses

Useful qualities and skills: • knowledge of WordPress • some experience of reviewing websites for functionality, usability, accessibility and performance, or a willingness to learn • familiarity with a wide range of websites and blogs • ability to work virtually with a team of volunteers who have varying levels of experience and health • an eye for detail • the role would be ideal for someone who needs experience of team working, or who wishes a career with IT in the 3rd sector.

https://ceredigion.volunteering-wales.net/volunteers/opportunity/10174346?searchqs=
 
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Northern Ireland

Michael Watt: Review finds 'significant failures' in patient treatment

A review of the clinical records of 44 patients who died under the care of former neurologist Michael Watt has found "significant failures in their treatment" and "poor communication with families".

While this review looked at a sample of cases in which people died, potentially thousands more could be affected.

The review arises from a 2018 recall of 2,500 outpatients who were in Dr Watt's care at the Belfast Health Trust.

He worked there until 2017.

About one in five patients had to have their diagnoses changed.

This separate review into 44 deaths was conducted by the Royal College of Physicians (RCP) at the request of the regulator, the Regulation and Quality Improvement Authority (RQIA).

It highlighted concerns over clinical decision-making, prescribing and diagnostics.

It reveals a misdiagnosis rate of 45% among this group of patients, twice that for living patients.

Speaking to BBC News NI, the RQIA's chair, Christine Collins, said the outcome of the review was "shocking and gut-wrenching as so many had experienced unpleasant deaths which they ought not to have done".

In a litany of complaints, the panel said Michael Watt was often a poor record keeper, that he did not refer to patient notes which were often kept on scraps of paper and that cases were not taken seriously.

He was also found to be "rude and unhelpful".

The review into deaths was limited and has been likened to a pilot project.
https://www.bbc.co.uk/news/uk-northern-ireland-63784995
 
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Sajid Javid to stand down as MP at next general election


Wasn't sure where to put this - but Sajid Javid will cease to be an advocate for ME/CFS in Parliament after the next election - date unspecified but has to be within the next two years.

https://inews.co.uk/news/politics/sajid-javid-stand-down-next-general-election-2006219

"Former Cabinet minister Sajid Javid has announced he will stand down as an MP at the next General Election.

Mr Javid, who held six Cabinet posts under three prime ministers including Chancellor, Home Secretary and Health Secretary, announced on Twitter: “After much reflection I have decided that I will not be standing again at the next General Election.

“Serving as the Member of Parliament for Bromsgrove remains an incredible privilege, and I will continue to support the Government and the causes I believe in.”
 
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Funding boost to open long COVID services up to people with long term conditions

Health Minister Eluned Morgan has today announced increased funding to widen access to Wales’ long-Covid services, including for people experiencing other long-term conditions.

Annual funding will increase to £8.3 million for Adferiad (Recovery) services. The community based rehabilitation services will continue to and support people with long COVID but they will also be expanded to people with other long term conditions whose rehabilitation and recovery are similar- for example, people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions.

The funding will also continue to support the self-management COVID recovery app and the All-Wales guideline for the management of long COVID.

Adferiad (Recovery) Services provide diagnosis, treatment, rehabilitation, and care for people experiencing long-term effects of COVID-19. They have been designed to respond to the particular needs of each individual whilst providing care as close to home as possible. People are supported by multi-professional teams including psychologists, physiotherapists, occupational therapists and nurses. If more specialist care is needed, people can be referred for further help and support.

Since the launch of the Adferiad programme in 2021, more than £10 million has been invested to support the development of these community based integrated multi-professional rehabilitation services and recovery services in all health board areas. It has also helped to develop workforce skills and expertise.

The latest review of the programme provides further assurance that Adferiad services continue to meet the needs of people who are accessing them. Most people reported an improved quality of life, and a positive experience of the services they received.
https://www.gov.wales/funding-boost-open-long-covid-services-people-long-term-conditions
 
The MEA shared this Parliamentary petition on their Facebook page recently, it may have been shared elsewhere, so sorry if this is a duplicate

Urgent funding for research into Long Covid and ME/CFS treatments and cures

“Around a quarter of a million people are suffering with ME/CFS in the UK and over 2 million with long Covid. Many of these people are severely disabled. There are no cures of specific medicines for these conditions. Urgent funding is needed for research to find effective treatments and cures.”
https://petition.parliament.uk/petitions/630551

Can only be shared by UK citizens and/or UK residents.

For discussion of this, go to the petition thread:
Petition: UK Funding for ME & Long Covid research into treatment
 
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Article in several papers UK: Health expert lists six reasons you might feel tired all the time


also
Doctor shares six little-known reasons you may feel tired 'all the time'

Doctor Raja Mohan, from Rainbow Labs, has explained some of the medical causes for fatigue, especially those that go beyond not getting enough shut-eye.


Chronic fatigue syndrome
This condition is a complex problem, which is when sleep doesn't help someone recover from fatigue.

Doctor Mohan said: "his is a complex disorder characterised by extreme fatigue that isn't relieved by rest."
Chronic fatigue syndrome
"This is a complex disorder characterised by extreme fatigue that isn't relieved by rest," the expert explained.

so far I've found 2

https://www.nottinghampost.com/news/health/health-expert-lists-six-medical-8551059

https://www.dailyrecord.co.uk/news/health/doctor-shares-six-little-known-30321593

only local but.......
 
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