Our latest #ThereForME blog gives an update from a busy few weeks. Ft. the @libdems.org.uk and @tessamunt.bsky.social! Link in next post 👇

Sometimes despite it all I can still feel lucky. I might not be at the top of the mountain but I can still look at it and appreciate it.

We’re the world's largest genetic study of ME/CFS. We’ll be sharing our findings on here when available, so follow DecodeME to find out more about our study in the meantime, and help our science reach more people in the #MECFS community. 🧬 #DecodeME #MECFS #pwME #myalgicencephalomyelitis

The Government say that those ‘genuinely in need’ will still be helped. Well let me paint a picture for you. As a former Radiographer I became disabled in 2021 after a Covid Vaccine I took to help stop the spread of Covid to vulnerable patients. I am now in bed 24/7. I am untableto watch tv

So I won’t qualify for PIP with these new rules despite being bedbound. What do I do now, there’s no way I can work at all. What will happen to me?

In just one irony in a series of ironies today (Long Covid Awareness Day) 4 years ago I had a Covid booster that gave me the gift of ME/CFS and POTS. I have lost so much including a job I loved working in the NHS. Solidarity to all those who have been similarly harmed by the Covid Virus.

Of course this post doesn’t acknowledge ME/CFS related to vaccination is real and the risks of vaccination in people with pre-existing ME/CFS are real, but only responds to the argument used to dismiss infection associated chronic diseases that they are just from vaccination. Still, Happy New Year.

VAX HORROR Traumatised Scots ‘gaslit’ by health bosses after horror complications from Covid vaccine www.thescottishsun.co.uk/news/1402807... Thank you @binitakane.bsky.social for speaking up for the vaccine injured 🙏🏻

Carmens research is always worth a look. onlinelibrary.wiley.com/doi/10.1002/...

Hope I can spend half an hour with my wife and son tomorrow. It’ll be in a low lit room from my bed. This is by no means guaranteed. I don’t think people realise just what our lives are like. And I consider myself lucky to have loved ones around me, many don’t have that. Thinking of all pwME/LC

I’m part of a Whattsapp group with some friends I’ve known most of my life. We meet up a few times a year and it’s always a really great time. I haven’t been able to participate since I got ill but I can’t bring myself to delete the group. They have all moved on now it seems and I’m just a story.

“ It’s not what happens to you but you how you deal with it that matters” Something I often used to say but I didn’t realise just how much I would be tested on this principle.

I think before we castigate people who aren’t Covid cautious too badly we have to ask ourselves, what would we do? Many people have been disabled by viruses that we’ve all had. I wasn’t particularly cautious about any virus before Covid. Our experience colours our judgement.

My cat used to curl up between my legs, making a little warm nest for himself. Since he died my dog had taken up the mantle. I have to say it was a lot less uncomfortable when the cat did it!

Today is one of those days where I remember that this is likely me for the rest of my life. I distract myself from this reality more than I face it but I can’t keep running away from it. Yes, I’m aware of all the research. Most diseases get more and they can’t solve them despite knowing the cause

Before I got ill, I’d spent a year preparing for this. I was literally 3 weeks from the event. It’s almost comical how different my life is. And I now have endure Psychiatrists pontificating over me being deconditioned, lacking motivation and enjoying secondary gains! youtu.be/UMpbgvdHI_o?...

Just had a sneaky look at X for the first time since migrating here. I’ll not be doing that again, what a truly awful place that is.

Whilst I’d be overjoyed for everyone with Long Covid if we have found the cause and it is indeed Viral Persistence I’d like to just voice a note of caution here. I have all the same symptoms from a Vaccine. Not similar symptoms, the same symptoms. It’s one hell of a coincidence if it is one!

The BPS proponents are always insisting that we should be listening to those who have recovered and use those techniques. I think this comes with a large presumption that it’s all from GET/CBT, but in my experience that’s like 1% of the stories I see. They don’t even follow their own logic!

A group set up to represent the best of science, stops using science.

When the “Professionals’ are responsible for the current situation including all the harm then maybe we shouldn’t be asking them what we should do. They have unsurprisingly decided all is good and we need more BioPsychoSocial research!

I see lots of claims about PEM being just another symptom, like muscle aches or brain fog. People claim it’s part of many diseases, just a symptom, nothing special….

At this point I wouldn’t be surprised if they actually just said that.

Just looked through all my old Reddit posts, I set up an account when I first got ill. I can’t help but feel sorry for that guy who was descending into this scary place, no help or support, looking for answers. And I refer to myself as that guy because the person I was doesn’t exist anymore.

1) Some background on the ongoing Cochrane saga... In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.

It’s hard to describe how it feels to be Vaccine Injured I have POTS and ME/CFS like many other Long haulers and yet I don’t have the same bad guy to vent against. It’s like Santa beat me up and I have to stay quiet because: ‘look at all the great stuff he does!’

Covid has shone a light on the fact that infections are a huge issue for humanity. Even pre-covid there was a reason why death rates went through the roof in flu season. People have always suffered death and disability from viruses and we just seem to have collectively accepted it with a shrug.

Good news

www.madinamerica.com/2018/10/the-... An old article and nothing to do with ME/LC but it does shed light on the inner workings of the Cochran collaboration. Given the baffling decision not to update the guidance on exercise for pwME it’s worth a read. And remember Paul Garner is a member.

I love all books (audio now) but since getting il I’ve really leaned in to Sci-Fi. The total escapism really helps to take my mind off my difficult reality . I’ve discovered Iain Banks and loved his stuff. My new favourite author, today I found out Elon loved his stuff and I’m devastated 😱 😂

Please share widely - the really important detail so often gets overlooked.

I feel like I’ve got nothing left to say. Nearly 4 years into this, bedbound and lost hope of recovery. I’ve raged against the system, decried the injustice, pleaded for understanding and yet nothing has changed. I just feel empty, spent, used up, I’ve lost faith in humanity in so many ways.

SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME. youtu.be/FX6Fk9-WSmo?...

For some reason medicine seems to have conveniently forgotten why GET is no longer recommended. It was tried for decades and it didn’t work. Many people became much worse, permanently. This isn’t some benign treatment it’s genuinely dangerous for pwME/LC www.scotsman.com/health/me-ch...

“probably been delayed as a result of activist activity and, shamefully, ⁦‪@NICEComms‬⁩” - Alan Carson Not only is that not true, the paper is ridiculously bad and shouldn’t have passed peer review. I’d be disappointed with this behaviour from a politician, never mind a Doctor.

It’s amazing how bad science gets stacked up. Bad papers citing bad papers propped up by the BMJ and others. Editors publishing based on personal relationships/bias. When I fell ill I remember thinking, wait till Ben Goldacre hears about this, turned out he was good friends with Simon Wessely..

I’m thoroughly sick of other people telling me what my illness is. People should be asking me, I’m the expert here.

ME/LC is like being stuck on loop - having to live your worst ever day over and over again.

I have some precious memories.

I was genuinely happy to see the assisted dying bill pass the first hurdle. I understand the concerns around it but when you’ve worked in a hospital you know what real suffering looks like and there is nothing noble about it.

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise As ever, the devil is in the detail TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted (Too bad they hid the crucial deets in an online supplement!) cc #pwME #MECFS

How did my puppy get this big!

It’s all about context - an absolute must read for pwME or pwLC www.theguardian.com/commentisfre...

Checking out the BlueSky functionality and reposting this excellent reaction to the Miranda Hart book misinformation. www.longcovidadvoc.com/post/dear-mi...

I suppose I’m going to have to get used to this platform. Do we still get the same engagement from medicine in here? PwME