Denise H.
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dormousey.bsky.social
Denise H.
@dormousey.bsky.social
21 followers 50 following 11 posts
Woman of many hobbies, but due to M.E. little energy to do any of them. Here to stay in touch with the outside world, which is tricky to interact with right now. Chair of KCIMESG (Kirklees and Calderdale ME Group).
Posts Replies Media Videos
dormousey.bsky.social
Anyone got anything planned for ME Awareness Day?
April 8, 2025 at 7:33 PM
Reposted by Denise H.
tomkindlon.bsky.social
Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held this year on Sunday 18th May 2025. Since its launch in 2013, the initiative has raised over £140,000 for charities.

How to take part
www.meresearch.org.uk/blue-sunday-...

#mecfs
wwww Blue Sunday The Tea Party For M.E. 18th May 2025 • Wear something blue (pyjamas count!) and/or • Dig out your best cups and saucers and/or • Bake or buy your favourite cake and/or • Post a photo of your tea party set-up to social media and/or • Invite others to enjoy tea and cake with you in-person, via video call, or by sharing photos and/or • Donate the price you'd pay in a café to an M.E. charity and/or • Connect with others online who are doing the same, by commenting on their posts Do one, a few, or all, to show your support for the M.E. community @theslowlane.me f@theslowlane_ME www.the-slow-lane.com
March 24, 2025 at 3:55 PM
Reposted by Denise H.
thereforme.bsky.social
Powerful story on @bbclooknorth.bsky.social about Dr Alexis Gilbert.

“"I've lived like this for two or three years and the thought of living like this for another two or three years is completely overwhelming, never mind a decade or longer,"

www.bbc.com/news/article...
Leeds doctor still 'bedbound' three years after Covid infection
Dr Alexis Gilbert was working in public health when he fell ill and now struggles with daily tasks.
www.bbc.com
March 20, 2025 at 9:24 AM
Reposted by Denise H.
longcovidsos.bsky.social
📢 What can you do? Tag a friend, share, and check out our GP & patient leaflets—developed with the Royal College of GP’s and backed by the Clinical Post Covid Society —to help #pwLC get the care they need.

longcovidsos.org/gp-leaflet
GP LEAFLET | Long Covid SOS
In close partnership with the Clinical Post Covid Society​ we have completely revised and updated the leaflet for GPs that we co-produced with the Royal College of General Practitioners.  This leaflet...
longcovidsos.org
March 15, 2025 at 9:12 AM
Reposted by Denise H.
eileenparkes.bsky.social
Much also applies in ME/CFS #millionsmissing
longcovidsos.bsky.social Long Covid SOS @longcovidsos.bsky.social · Mar 15
🚨 Mythbusting #LongCovid with Dr Amir Khan🚨

Long Covid is real. It’s serious. And it’s affecting millions.

On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.

Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
March 15, 2025 at 10:23 AM
Reposted by Denise H.
ecomeg.bsky.social
I lived with ME/CFS for 12 years.

Full solidarity with everyone affected by Long Covid.

You are seen. You are heard and you matter to all of us here in @greenparty.org.uk

#LongCovidAwarenessDay
March 15, 2025 at 12:23 PM
Reposted by Denise H.
aroundscotlandme.bsky.social
Cutting benefits won’t get #ME/#CFS sufferers back to work—it will just push them further into hardship.
Starmer's approach seems to paint the poor as 'scroungers' or 'work-shy.'

Disabled people need support, not punishment. #MEcfs #DisabilityRights #Starmer #pwme
March 11, 2025 at 11:35 AM
Reposted by Denise H.
binitakane.bsky.social
My message to the Government ⬇️
#FundThePlan
#MECFS
#LongCovid
thereforme.bsky.social ThereForME @thereforme.bsky.social · Feb 26
And to kick things off, here’s @binitakane.bsky.social showing allies across the UK how it’s done and calling on the government to #FundThePlan 🙌

Allies, over to you!
February 26, 2025 at 10:17 PM
dormousey.bsky.social
@katedeardenmp.bsky.social Local constituents need support and this is why.
thereforme.bsky.social ThereForME @thereforme.bsky.social · Feb 26
And to kick things off, here’s @binitakane.bsky.social showing allies across the UK how it’s done and calling on the government to #FundThePlan 🙌

Allies, over to you!
February 27, 2025 at 10:31 PM
Reposted by Denise H.
achronicvoice.com
“Many people with ME recognise the strain the #NHS is under - what's less easy to understand, they say, are the attitudes of some of the #healthcare staff they encounter": https://buff.ly/485Giui #ChronicIllness #MECFS #ChronicFatigue
Why is there poor care for ME?
What is NHS care like for people with severe ME, also known as chronic fatigue syndrome?
buff.ly
February 21, 2025 at 11:30 AM
Reposted by Denise H.
stevejkpbooks.bsky.social
Heard some fab news this morning - Audible have selected How To Do Life with a Chronic Illness by Pippa Stacey as one of their 'Best Listens of 2024' in the UK www.audible.co.uk/ep/best-of-t...! You can find out more about Pippa here: www.instagram.com/lifeofpippa/...
Cover pic, yellow background with blue text, of the book How to Do Live with Chronic Illness by Pippa Stacey, with a wreath logo beneath saying 'Audible best of the year '24'.
November 15, 2024 at 10:55 AM
Reposted by Denise H.
wholesomememe.bsky.social
February 18, 2025 at 7:31 PM
Reposted by Denise H.
medidier.bsky.social
Thank you @thereforme.bsky.social Another great post by a NHS physician (now patient). Spot on. I wished everyone could read it. Proposals are easy, not too costly, but it woud mean saving lives and probably avoiding progressing into severe for many #pwME.

www.thereforme.uk/p/designing-...
Designing an NHS that’s #ThereForME
Reflections from a former health professional
www.thereforme.uk
February 18, 2025 at 9:31 AM
dormousey.bsky.social
We need all the support we can get. Feeling ignored, feeling like no one cares or properly understands how such a high impact illness has such a low priority for government. @katedeardenmp.bsky.social
thereforme.bsky.social ThereForME @thereforme.bsky.social · Feb 19
And also brilliant to see MPs across parliament on the case 💪

Quote in the piece from @joplatt.bsky.social 🌹
“Jo Platt, a Labour MP and chair of the all-party parliamentary group on ME, who had the condition, said: “People living with ME have waited far too long for real research funding and have been let down by the NHS for decades. We owe it to them to deliver a solid plan backed by strong leadership and the resources needed to make a real difference.”
February 19, 2025 at 1:41 PM
dormousey.bsky.social
Our thoughts are mainly with those living a painful existence and their loved ones who are so reliant on something finally changing. @katedeardenmp.bsky.social
thereforme.bsky.social ThereForME @thereforme.bsky.social · Feb 19
Karen also shared her husband James’ voice, one of many people affected by ME lying in a dark room waiting for a breakthrough 👇
“My husband James, who has very severe ME, spends most of his days lying alone in a darkened room, waiting for a research breakthrough. While he can’t communicate much, last week he asked me, ‘Will they fund more research?’ The delivery plan needs to be prioritised by ministers. It will fail unless backed by strategic funding to accelerate research and clear targets for transformed NHS care.”
February 19, 2025 at 1:36 PM
dormousey.bsky.social
Incredibly disappointing for some, heartbreaking for those who have waited decades for change and realise that there will still be no hope for those predictably coming after them. It's a crime that so many people in their prime are being ignored. @katedeardenmp.bsky.social
thereforme.bsky.social ThereForME @thereforme.bsky.social · Feb 19
Our co-founder @karenlhargrave.bsky.social quoted in @thetimes.com today on news this week that no additional funds are planned for the new ME delivery plan.

www.thetimes.com/uk/healthcar...
“This delivery plan is a once-in-a-generation opportunity to give people with ME and their carers vital hope for the future. It is difficult to see how the plan can meet its objectives without resources behind it.”
February 19, 2025 at 1:34 PM
dormousey.bsky.social
😲
heatherfeather.bsky.social heather @heatherfeather.bsky.social · Feb 19
in case you were wondering what living with ME/CFS is like
reddit screenshot "r/cfs 3 hr. ago mira_sjifr I got denied from a highschool that specializes in disabilities and chronic illness because i am "too sick".."
February 19, 2025 at 1:21 PM
dormousey.bsky.social
After decades of waiting, this is just a slap in the face
February 19, 2025 at 1:11 PM
Reposted by Denise H.
thereforme.bsky.social
Great to see this update from the APPG on ME!

📆 Details below on how you can invite your MP to join the next meeting on 5 March

✍️ New online form to contact the APPG with your concerns and priorities

appgme.co.uk/contact-us/
February 17, 2025 at 4:28 PM
dormousey.bsky.social
As someone with M.E. thus is scary.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Feb 16
"Patient advocate Lena Kjempengren-Vold has written a good opinion piece for the Journal of the Norwegian Medical Association ..."

Google translations
tidsskriftet-no.translate.goog/2025/02/deba...

tidsskriftet-no.translate.goog/2025/02/deba...

Screenshot from Science for ME update

#MEcfs #PwME
Norway Patient advocate Lena Kjempengren-Vold has written a good opinion piece for the Journal of the Norwegian Medical Association about how professionals with a biopsychosocial approach of ME, such as the Oslo Chronic Fatigue network and the COFFI network, talk about ME patients, not with them. She describes how this leads to the continuation of treatments such as CBT and GET, despite patients and research reporting they are harmful. Professor Vegard Bruun Bratholm Wyller from the COFFI network wrote a response proving her point by claiming it's difficult to understand what she meant and further that CBT/GET are safe and documented treatments for ME. Kjempengren-Vold's article l Wyller's response l Thread
February 16, 2025 at 9:13 PM
Reposted by Denise H.
cabruce.bsky.social
“As a nurse, I am ashamed to say that I knew very little about #ME, nor had I been taught about it during my training.”
Rebecca Logan
#ThereForME
thereforme.bsky.social ThereForME @thereforme.bsky.social · Feb 4
We've got a great #ThereForME post today from Rebecca Logan.

Rebecca is a former nurse who shares her experiences of #LongCovid, learning about ME and her work campaigning with Hope 4 ME & Fibro NI

www.thereforme.uk/p/too-ill-to...
Too ill to treat?
A former nurse shares her experiences campaigning for better care in Northern Ireland
www.thereforme.uk
February 4, 2025 at 11:44 AM
dormousey.bsky.social
Signed for all those stuck without treatments being forced into a box they don't fit.
January 21, 2025 at 9:31 PM
Reposted by Denise H.
irishmecfsassoc.bsky.social
Saturday, January 18

CAREGIVER SUPPORT CALL ( for caregivers of people with ME (myalgic encephalomyelitis), Long COVID, etc.)
www.meaction.net/event/me-car...

3:30PM ET / 8:30PM in GB & Ireland

Find the time in your time zone here:
www.timeanddate.com/worldclock/f...

#MEcfs #CFS #LongCovid
One hand on top of another in a comforting gesture Text: #MEaction ME caregivers support call https://www.meaction.net/act-events/
January 7, 2025 at 8:18 PM
Reposted by Denise H.
irishmecfsassoc.bsky.social
We'd love if you could nominate us movementforgood.com/index.php?cn...

Use that link or just type in "myalgic" & you will find us in a short list; otherwise use our charity number 20100254

Money will be divided 50/50 general/research funds

You can also nominate other charities

#MEcfs #CFS
One of the Irish ME/CFS Association logos Help us win £1000. Please nominate us today. Movement for Good logo Benefact Group logo
January 8, 2025 at 6:50 PM
Reposted by Denise H.
ben-no.bsky.social
Danke für die Awareness für #MECFS.

Wer sich näher beschäftigen möchte, folgt gern jeden Mittwoch der #MEawarenessHour oder aktuell der #lemonChallengeMECFS
Farbige Schrift auf schwarzem Grund mit dem Text: @Alt-text.bsky.social
December 12, 2024 at 9:34 PM