United Kingdom: News from #MEAction Network UK

Q: as people with me are often not
supported or believed by their gps and
other professionals rebecca would like
to know if there is anything that's
being done to push the guidelines out to
the medical professionals through their
channels.


so something like this is obviously
valuable although it doesn't tend to
reach the physicians who um don't
consider mecfs to be a real disease um
but we are trying to publish.

interestingly nice often publishes

something in the bmj but in this case

nothing has been published yet


the actual nice committee um so we are
trying to get things published as as
committee members to get the information
out there nina muirhead who many of you
may have heard of has a big education
program
um which is initiate initiates out of
cardiff
um but is is you know goes all over the
uk
and she is very much trying to push for
education not just for um gps and and
hospital physicians but also for nurses
so she is part of a nursing group for
nurses in me
um so that's the problem is and elora
finley who was on the committee with us
um who is a gp herself explain that in
medical school you probably get only a
couple of hours to do mecfs in the whole
of your medical school training
and you've got to make sure it's the
right person delivering that program and
somebody who really understands the
disease
so i don't think that this is going to
happen in a heartbeat and i think it's
really really important that we
don't let up okay the guidelines have
been published but there's still a lot
of room for actually making sure that
they're fully implement implemented and
particularly in terms of education
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"interestingly nice often publishes something in the bmj but in this case
nothing has been published yet"

does anyone know if NICE have anything in the pipeline on this?
 
i think that the tightening up of the
diagnostic criteria can only be helpful
so by saying post-exertional

malaise

is a key symptom for me cfs i think is

critical
because i do think there have been times
in the past when um mecfs might have
been confused with depression and then
if you treat the person with depression
with exercise and cbt they miraculously
get better and i think
perhaps there's been some sloppiness
about the correct diagnosis so i do
think the diagnostic criteria
will help um and i think again this is a
job for the charities for
people um in education in research for
clinicians to actually educate their
peers their colleagues
and um the general public about me cfs
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"by saying post-exertional malaise is a key symptom for me cfs i think is critical"

yes, but it still isn't mentioned on the NHS websites.

Also, PEM is now being picked up by others not just the ME community and they are putting their own spin on it. It is crucial that it is put out there asap as the defining symptom of ME, but that this is expanded on with the full NICE guideline description of what it is.
"
Post-exertional malaise
The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.


Activity
Any effort that uses energy, which includes cognitive, emotional and social activity as well as physical activity. Different activities combine and interact to cause a cumulative impact for the person."
 
#MILLIONSMISSING LONDON SEPTEMBER 2022

SEPTEMBER 13 @ 1:00 PM – 3:00 PM BST
#MEAction UK is excited to be able to meet again in-person this September for #MillionsMissing London 2022! Join us at Parliament Square, London SW1A 2AA on 13th September from 1-3pm to demand the millions of pounds missing from ME research in the UK! Mark your calendars now!
...
Speakers:
Prof Douglas Kell – microclot research in ME.
Hayley Valentine-Howard – pregnancy and ME
CureME – Eliana Lacerda
...

More details at link:
https://www.meaction.net/event/millionsmissing-london-september-2022/
 
Trish said:
#MILLIONSMISSING LONDON SEPTEMBER 2022

SEPTEMBER 13 @ 1:00 PM – 3:00 PM BST
#MEAction UK is excited to be able to meet again in-person this September for #MillionsMissing London 2022! Join us at Parliament Square, London SW1A 2AA on 13th September from 1-3pm to demand the millions of pounds missing from ME research in the UK! Mark your calendars now!
...
Speakers:
Prof Douglas Kell – microclot research in ME.
Hayley Valentine-Howard – pregnancy and ME
CureME – Eliana Lacerda
...

More details at link:
https://www.meaction.net/event/millionsmissing-london-september-2022/
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From ME Action:

#MillionsMissing London is Postponed
Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are entering we have postponed #MillionsMissing London that was due to take place on September 13th in Parliament Square.

https://www.meaction.net/2022/09/09...ostponed/?mc_cid=fa704a8adc&mc_eid=83ddbd3a71
 
https://www.meaction.net/2022/09/09/elementor-58714/?mc_cid=865fd5cab4&mc_eid=83ddbd3a71

The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed.

Following the death of Her Majesty the Queen, the Scottish Parliament is suspended, which means we won’t be able to achieve the aims of the event. We appreciate that it’s disappointing and apologise for any inconvenience caused, particularly to those of you who have been planning your journeys and managing your energy to make it.

We’re looking at new dates in the last week of September and we’ll update you as soon as we can. Thank you for your understanding.
 
Millions Missing London is on next week.
From an email:

#MillionsMissing London is getting nearer and we are excited to be able to meet up again in person. Just one week to go now, Tuesday, 18th Oct, Parliament Square 1-3pm and we would love you to be involved either in person or virtually!

We have some fantastic speakers planned. Prof Douglas Kell from Liverpool University will talk about his micro clot research. Hayley Valentine-Howard will talk about how ME affects pregnancy and its implications on delivery and the postnatal period and Claire Tripp will discuss the Decode ME Study. Sarah Boothby, Maeve Boothby O’Neill’s mum, a registered social worker advocating (pro bono) for families where death from ME is a possibility will be talking about her experiences.

We are delighted to get so much support from MPs. Emma Lewell-Buck MP, Hywel Williams MP and Alex Chalk MP, Lord Bethell, Baroness Scott and Fleur Anderson MP have all accepted our invitation. Lord Bethell has kindly agreed to speak.
https://www.meaction.net/event/mill...new-date/?mc_cid=ce8dc3d882&mc_eid=83ddbd3a71


Also suggestions for virtual actions:
https://www.meaction.net/?s=Millions+Missing+London
 
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Join the UK and Scotland’s digital campaign this #MillionsMissing

https://www.meaction.net/2023/04/14/join-the-uk-and-scotlands-digital-campaign-this-millionsmissing/
MEAction website said:
This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing – drawing attention to the people missing from their previous lives and wider society because of ME.

Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades.

We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?

There are two different concepts for photos we’re asking people to share in the run up to and on 12th May.

You can take part in one or both depending on what’s comfortable and possible for you.
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Two photo categories:

1) Your view with ME

(photo from bed/couch/chair showing reality of being confined to home)

2) The spaces people with ME are missing from

(photo showing all the places and activities that people with ME can't experience in person)
 
#MEAction UK And Scotland Update Prevalence Figures Based On New Data

"Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey."

"The Center for Disease Control (CDC) has published results of a survey which provides data following the onset of the COVID-19 pandemic and is the most recent credible data we are aware of. Importantly, it will include any increase in the prevalence of ME due to the pandemic, as well as many with Long Covid, due to the overlaps between the two conditions."

"The US survey results show that 1.3% of adults in the US have ME/CFS. This is significantly higher than the 0.4% estimate derived from UK Biobank data before the COVID-19 pandemic and used in the NICE guideline on ME/CFS.

Applying these new estimates to UK populations gives estimates of 700,000 people with ME in the UK and 58,000 in Scotland. Prior to this we were using figures of 250,000 and 22,000 respectively."

https://www.meaction.net/2024/02/01...-update-prevalence-figures-based-on-new-data/


Our discussion thread for the CDC survey is here, CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al
 
From #MEAction UK:

SOS: Save our Science

A few quotes:
#MEAction UK said:
May 12th is Myalgic Encephalomyelitis Awareness Day. On this day, the #MillionsMissing with myalgic encephalomyelitis (ME) gather to demand an increase in research and care for people with ME. In the UK people with ME finally had the possibility of significant research funding from the government through the ME/CFS Delivery Plan. With no money allocated to date in the Delivery Plan hopes of progress are dwindling. Now we want to make sure that people with ME get the money desperately needed to fund research.

#MEAction UK encourages all people with post viral illness and disabilities to join this fight. It’s time to send out our SOS signal.
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#MEAction UK said:
Postal and online campaign

We want to flood the funding organisations in real life and online with our SOS messages.

In the UK we are concentrating on getting research into ME fully funded in the ME/CFS Delivery Plan. Use all the tools below and your own imagination to craft an SOS that can’t be ignored. Send your SOS to the government, the Medical Research Council (MRC), Department of Health and Social Care (DHSC) and National Institute for Health and Care Research (NIHR) using the addresses below. Tell them your story and why properly funded research into ME is vitally important to you.

Your SOS could be a photograph, a painting, a cake, a card, a story, a letter, a film, a pillowcase, embroidery … anything that can be delivered can be used!
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From Facebook:

We are delighted to announce that MEAction UK has officially become an independent, registered UK charity. This marks a new chapter in our journey to secure better recognition, research and support for people with ME right here in the UK.

Why we’ve made this change

Over the past 10 years, our incredible volunteers have achieved so much and created a powerful movement. By establishing MEAction UK as a standalone charity, we can:
.
- Fundraise locally, ensuring every pound you give directly benefits UK-based research, advocacy and patient support programmes. This includes collecting Gift Aid on applicable donations, increasing the amount we receive by up to 25%

- Carry more weight when advocating at Westminster and Holyrood parliaments for policies and guidelines that reflect the needs of people with ME across the UK.

- Collaborate with and challenge UK institutions, from the Governments and the NHS to NICE. We will continue to campaign for improved research funding, diagnosis, care pathways and treatments of people with ME at every level.

- Pressure even harder for better and fair representation of ME in the media, and to fight harmful stereotypes and bad science.

- Fight for up to date healthcare education and training to be made available to all areas of the health and social care professionals.

What this means in practice.

MEAction UK and MEAction (US and Global) will continue to work in close partnership, sharing expertise, knowledge, ideas and amplifying each other’s campaigns.

Our trustees, now operating under UK charity law, can develop bigger and bolder UK-specific projects.

While #MEAction UK will focus on UK-wide issues, #MEAction Scotland’s focus will continue to be on initiatives tailored to the Scottish challenges and political landscape.

How to stay involved

Follow us on social media:
UK social media:
X (Twitter) - The #MEAction Network UK
Facebook - The #MEAction Network UK
Instagram - @MEActNetUK
Bluesky - meactionuk.bsky.social
LinkedIn - MEActionUK
Scotland’s social media:
X (Twitter) - @meactionscot
Facebook - MEAction Scotland
Instagram - @meactionscotland
Bluesky- meactionscotland.bsky.social

Sign up for our mailing list to receive updates on our campaigns, research breakthroughs, policy wins and grassroots events across the UK.
https://meaction.org.uk/contact

How can you support us?
If you would like to help:
- Donate https://www.totalgiving.co.uk/donate/meaction-uk
- Volunteer for campaigning, awareness events or patient support groups in your area
- Share our posts and encourage your local MP or MSP to prioritise ME

#MEAction UK and #MEAction Scotland now have the autonomy to drive focused UK-based change, while still standing shoulder-to-shoulder with the MEAction global movement.

We’d like to thank the staff (and our friends) at our US parent organisation #MEAction who have worked so hard over the years to get us where we are now for all the support and help that they have provided.

We’d also like to thank the many volunteers in the UK who have put in untold hours of effort and helped us with all the wins we’ve already achieved.
Thank you for your unwavering support. Together, we will continue to push for the research, recognition and resources that everyone with ME deserves.

#CharityAnnouncement #DisabilityAwareness #ResearchForME #SevereME #MyalgicEncephalomyelitis

Image: Red text on beige background. Heading 'Exciting New' illustration of folded ribbon with UK flag and US flag on. Text at bottom MEAction is now officially an independent UK registered charity. MEAction logo at bottom.
 
Dolphin said:
From Facebook:

We are delighted to announce that MEAction UK has officially become an independent, registered UK charity. This marks a new chapter in our journey to secure better recognition, research and support for people with ME right here in the UK.
Click to expand...

This news has been posted on the #MEAction website here:

Exciting News for MEAction UK
I have great news!

After years of building up #MEAction UK and #MEAction Scotland, the volunteers on-the-ground have officially founded their own charity!

#MEAction Community, I am happy to introduce you to the Official MEAction UK Charity!
Click to expand...
 
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