Local Housing Allowance on a downward trend, at a time when rents are increasing.

Are you a GP who needs to update your knowledge?
👇

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Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”.

“We’ve had letters from GPs saying we have changed their minds”

Clip from Hope 4 ME & Fibro NI Collaboration

BBC Feedback | Response to Suzanne O’Sullivan YouTube video by Broken Battery

BBC Radio 4 Feedback full segment. Listeners share their concerns about Dr Suzanne O’Sullivan’s claim that #LongCOVID is psychosomatic. Includes an interview with @NickyProctor (11 mins)
youtu.be/Du4devaRH5w?...

Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.

👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social

🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan.

Text: Sir, Parents face significant struggles navigating the autism assessment and diagnosis system. Long waiting lists, layers of bureaucracy and poor support after diagnosis leave families feeling exhausted and alone. The notion that children are being “incentivised” to seek an autism diagnosis conjures up the idea that families are somehow seeking a shallow reward. In reality, the incentive in question is getting basic support in school or accessing mental health services to prevent their child from reaching a crisis point. Language shapes public perception, and taken out of context it can have a negative impact on understanding and support for autistic people. We need to keep the focus on how we can improve systems so that autistic children and young people achieve better outcomes and live happier lives. Jolanta Lasota Chief executive, Ambitious about Autism

Letter in Times today

🚨What is the problem with just testing PEM with the screening questionnaire DSQ-PEM and then stratify accordingly?
A screening questionnaire is not a diagnostic tool.
Using DSQ-PEM alone is insufficient because:
It includes a large proportion of false positives! ⚠️
Why?
1/n

Thank you so much.
Good to know we, the #ME community, have strong advocacy from Tessa as chair of the APPG and Carolyn as chair of Forward ME.

Why endometriosis should be classified as a whole-body inflammatory disorder It’s estimated that 10% of women worldwide are affected by endometriosis.

It’s estimated that 10% of women worldwide are affected by endometriosis.

Could still make a difference!

Advise ventilation in schools, hospitals etc, give accurate advice about masks 😷 (not flimsy surgical ones). Provide appropriate PPE to protect healthcare workers!

But hey, that would mean admitting “flawed” advice 6 years ago that has yet to be corrected!

Black on white background poster with QR code in the bottom right corner reading: WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY? YOUR WEEK? YOUR YEAR? ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone. Practice self care & protect your community Wear a mask

WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY?
YOUR WEEK? YOUR YEAR?
#ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone.
Practice self care & protect your community.
Wear a mask

This & more ko-fi.com/saltydyke/shop

Under strain: How NHS pressures are deepening health inequalities for women Health inequalities in the UK are not only about income or geography. They are also shaped by gender - affecting different groups of women in distinct ways.

These gendered inequalities don’t exist in isolation. They intersect with inequalities related to class, race, disability, sexual orientation and gender identity, creating even greater barriers to access, treatment and outcomes for many groups of women.

Read more 👇

www.wbg.org.uk/article/unde...

Vase of colourful flowers.

I thought I’d go and see my Mam today, with it being Mother’s Day.
She’s 88 and has advanced dementia, she won’t know if I go or not - but I do.
I can’t, because of an #ME flare that’s kept me in bed.
Love to others in sim situation. 🥰 to all.

International Long Covid Awareness Long Covid Long Covid Awareness Day March 15th #LongCovid #LongCovidAwarenessDay COVID Viral persistence PASC. COVID19 Long Covid awareness ribbon colors grey/teal/black

Today is #LongCovidAwarenessDay and--once again for the cheap seats--ANYONE who's had Covid, particularly folks who've had it more than once, can develop #LongCovid.

It's an insidious post-infectious illness like #MyalgicEncephalomyelitis.

So far, no treatment or cure

www.longcovidawareness.life

It is heartening to know that we have an ally in this role who understands the decades of neglect faced by the #ME community.
I sincerely hope you can meet with @tessamunt.bsky.social very soon and that we will see a step change in government actions on #ME and Long Covid.
#ThereForME

SYMpToMs OF OVARIAN CANCER FEELING FULL QUICKLY AND/OR LOSS OF APPETITE 1 2 PERSISTENT BLOATING (NOT BLOATING THAT COMES AND GOES) 3 NEEDING TO WEE MORE URGENTLY OR MORE OFTEN THAN USUAL 4 PAIN IN YOUR TUMMY OR PELVIS (THE AREA BETWEEN YOUR HIP BONES) Target Ovarian Cancer

It’s Ovarian Cancer Awareness Month, everyone. There’s no routine screening for ovarian cancer, and it isn’t picked up by other gynaecological screening (such as smear tests). But if you do think it might be a possibility, you can ask your GP for a blood test and/or a scan.

Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th...

All welcome to comment and make suggestions before the document before it is finalised.

@ashleydaltonmp.bsky.social @tessamunt.bsky.social pls take this seriously. I'm begging you. QEH's approach is UNSAFE for pwME. I am sure it would be fine for someone who isn't in rolling PEM - but that's not the case and it will kill her. 9 weeks without eating now, in agony and gastric shutdown.

#SaveSavannah #SevereMErgency

#pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy

@cabruce.bsky.social
@katybrc.bsky.social
@actionforme.bsky.social
@meresearchuk.bsky.social
@meactnet.bsky.social @malnutritionme.bsky.social
#ME

@ashleydaltonmp.bsky.social
Your words “these must become never events”

PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS

www.meresearch.org.uk/claims-of-nh...

Clip from German TV - 19-year-old Martha developed ME/CFS following COVID (English subs)

Mostly confined to her sofa, carefully pacing her energy to avoid crashes.

No school. No social life. No approved treatment. #LongCovid

Summary The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model. With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.

An Open Letter to British Association for Clinicians in ME/CFS (BACME) in Response to the Document ‘Guide to Therapy’, 2025.

www.s4me.info/threads/an-o...

Letter authors:

Jonathan Edwards (professor of connective tissue)
Michelle Bull (physiotherapist)
Joan Crawford (psychologist):

A text: ‘Open call!’ Below it a hand-written text reads ‘Myalgic Encephalomyelitis Kills’. A text: ‘An online Group Exhibition’.

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026.

The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!

1/9

#MECFS #pwME #OpenCall #OnlineExhibition

Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n

We want to hear from women with long term health conditions to understand what is working or not in diagnosis and treatment/care. Please share your experience through our anonymous survey: www.smartsurvey.co.uk/s/77KRR3/

Or you can email: healthwatch@yorkcvs.org.uk or call 01904 621133.

At Our Pace: A Blog Space for Young People Living with Long Covid At Our Pace was created to offer young people living with Long Covid and overlapping illnesses a supportive space to reflect, share, and contribute in ways that work for them. Many young people need ...

We’ve created At Our Pace to support young people with Long Covid and overlapping illnesses to share their lived experiences and to build a growing set of resources shaped by those voices.
Flexible, supportive, and youth-led.

#Blog:
www.longcovidkids.org/post/at-our-...

#AtOurPace

Today we’re launching #ForThoseWhoCant, our new fundraising campaign.

It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work.

Email fundraise@longcovid.org or click here for more: www.longcovid.org/get-involved...