Sarah Mac

This. Every day we try to be active.

@johnthejack @harryjfawcett Remember the '80's? Special forces were sent in to various situations to 'deal' with a problem, without civilian casualties in most cases. Life seemed to matter more in those days. Or am i remembering with rose tinted glasses perhaps?

Israeli media report Israeli used intelligence tool, tracking Hezbollah operatives, timing strikes to kill largest number on busy afternoon with inevitable large-scale civilian casualties. Risk to 13-yr-old girl deemed calculated to be worth it @harryjfawcett #c4news

Think tanks like Policy Exchange plant right wing propaganda in the media in the guise of “research”. We should be able to find out who funds them: petition.parliament.uk/petitions/7529…

"Evidence consistently points to mitochondrial oxidative stress, redox imbalance, impaired Ca2+ handling, and altered signaling pathways in skeletal muscle of patients with ME/CFS." Yet doctors rather than reading the science, hold onto their beliefs like a koala to a tree.

@DafoeWhitney 😘💙💙

In The Hospital In January this year I spent 3 weeks in the hospital for a serious infection and related conditions. My experience there was at once a surprise and a discouraging setback that added to my symptom burden. In this post I relate my experience and thoughts on what it means for all of us. Read the whole piece on my blog or watch the video above. 💙 whitneydafoe.com/mecfs/?post=in… #mecfs #chronicillness #pwME #LongCovid

@WilliamFurness @threadreaderapp unroll please

I've been saying this for a while. Now JAMA Psychiatry said it louder. 54 studies. 17,065 people. The real story of depression isn't in the monoamines... It's in the mitochondria. 🧵

@Chronodendron Same. Screen suits me. Buttons suit me, as a disabled person. Solid and reliable, great battery.

I’m so upset… My Kindle is fifteen years old. It still works fine, and I want no other. I read a lot, and this is the only e-reader that doesn’t hurt my eyes. None of the new models have a screen that so perfectly mimics paper. And now Amazon is forcing me to buy a new one. 😡 I don’t need a touchscreen or sound, and I definitely don’t want adverts! 🤬 The timing couldn’t be worse either… I can’t afford it right now. ☹️ I guess I won’t be buying more ebooks for a while... I’ll just have to read the ones I already have.

NEWS: Labour to ration NHS referrals Labour’s plans to ration NHS referrals are deeply concerning and will affect us all. Instead of being referred directly to a specialist when your GP thinks it’s needed, now your doctor will have to email a specialist and you have to wait for them to email back their view. Once your GP gets the email back, they either need to call you in for another appointment, or provide that specialist's assessment to you by letter. Then you will need to wait and see whether that advice (given without seeing you in person) works for a period of time, before then going back to your GP again, and asking again to be referred to a specialist if you are still suffering with the health issue. The result? Longer waiting times for specialist care, while specialists spend more time writing emails than actually seeing patients and using their expertise. On paper, waiting lists will therefore look significantly shorter, but only because fewer people ever make it onto them. You are not on a waiting list while the GP is waiting for the specialist to send their advice (without seeing you). You are only on a waiting list when, and if, you then request later to be seen by the Specialist, once you've gone through all of the process above. ⁠So all of this means the Government can announce they've cut waiting lists massively, but what is actually means is longer waiting times for specialist care for all of us as patients, and specialists spend their time writing emails not seeing patients.

*Unedited manuscript* Proteomic signatures in cerebrospinal fluid and their clinical associations in patients with ME/CFS" Bragée, et al. Scientific Reports (2026) nature.com/articles/s4159… Work part-funded by @MEResearchUK alongside OMF and the Amar foundation.

@1goodtern @threadreaderapp unroll please

Here's a quick personal story. Twenty something years ago, I picked up a mystery infection that hammered my system and left me with all sorts of health problems.

@sunsopeningband I'm really bloody tired of so-called experts claiming that, just bc mind & body are connected, emotional issues must automatically cause diseases for which biomedical science hasn't yet found a physiological basis. This attitude is arrogant, ignorant and profoundly unscientific.

@katienotopoulos Same, very much so.

This is A NIGHTMARE. Amazon is bricking old Kindles, including my beloved Kindle 5 (with the side buttons). I hate the touch screen versions, I've tried them and I'm always accidentally flipping pages.

@1goodtern A. Find a treatment/cure? B. Say that people are obviously malingering and withdraw all help and support? Hmm, what shall we choose? UK? (See current benefits/welfare changes).

So it's now recognised that Long Covid is probably costing the world economy about a trillion a year in lost productivity. You're reading that right. So what should we do about it.

@BigIssue Just heard Scotland's top Conservative being interviewed on Radio Scotland, he says that carers, full time carers for disabled family, will be expected to work. When questioned about how that could be made to work, he repeated it. So what plans have they got for disabled?

The £184 billion question: What would happen if the unpaid carers stopped caring? #Echobox=1775552575" target="_blank" rel="nofollow noopener">bigissue.com/opinion/what-h…

Global super-rich may have hidden $3.55tn from tax officials. 0.1% of households have more wealth than the poorest half of the global population. Govts funded by the super rich, don't shut down tax havens and the tax abuse industry or levy wealth tax. theguardian.com/world/2026/apr…

What a joke, 84 years old and caring for his 2 #LD adult disabled children himself . I hope someone in #publiclaw picks this case up after Southern health trust remove care package What was once a three-hour care package provided by their local health trust for both sons, was cut to an hour in 2024 for one son. That package is set to end on Friday. Ronan's part of the care package ended in March 2024, leading to a reduction in the time carers spent in the home. Donall, who is also autistic and has obsessive compulsive disorder, currently has a carer come in for an hour each day to get him up and dressed. According to the last Census in Northern Ireland, in 2021: About 222,000 people (12% of residents) were providing some form of unpaid care in 2021
About 70,000 individuals provided 50 hours or more unpaid care each week -a significant increase from the previous figure of 56,000 recorded at the last census in 2011
People aged between 45-64 are likely to have more caring responsibilities than other age groups
About 3,000 children under the age of 15 are carers #Carers #NorthernIreland bbc.co.uk/news/articles/… @wesstreeting @EdwardJDavey @SarahSpoorUK @ris_law @LeighDay_Law @Autism

DecodeME was a crucial first step. SequenceME, the follow-up, is what actually would allow us to go deeper. For such an incredibly important project, it’s kind of crazy that institutional funding is not getting off the ground, and that private funders with the potential capacity to do so are also not stepping in at the scale needed. Expectations seem split in a barbell-like way: some underestimate, others overestimate what SequenceME will deliver in the short to mid term. I believe it’s unlikely it will uncover many single decisive mutations. A more likely outcome is a pattern of mixed genetic architecture: largely polygenic, with many small-effect variants, plus maybe some rarer and structural variants in specific subgroups? This is how many complex diseases look, including e.g. Parkinson’s and ALS. The real value is probably not a “breakthrough gene”, it's more likely we will get a polygenetic risk score and better models and subgrouping. All that would set us up for future AI models and downstream treatment target identification pretty decently.

@PaulRidley5 Just heard Scotland's top Conservative being interviewed on Radio Scotland, he says that carers, full time carers for disabled family, will be expected to work. When questioned about how that could be made to work, he repeated it. So what plans have they got for disabled?

The £184 billion question: What would happen if the unpaid carers stopped caring? bigissue.com/opinion/what-h…

@PaulGadsden82 I understand that, but know i'm seen as lazy now, which i absolutely can't stand. I was never lazy, i was on the go 15 to 16 hours a day, so it grates enormously when it's implied, as it often has been, that i'm using a fake illness to get out of my responsibilities.

I don't understand this idea that people with ME were highly driven and motivated before illness. Surely it is a stereotype that needs to die? It most certainly doesn't describe me at all.

@BBCRadioScot Just heard Scotland's top Conservative being interviewed on Radio Scotland, he says that carers, full time carers for disabled family, will be expected to work. When questioned about how that could be made to work, he repeated it. So what plans have they got for disabled?

In today’s Call the Leader phone in, you can put your questions to Scottish Conservative leader Russell Findlay. These will continue between now and polling day with your chance to put your questions to party leaders.