My opinions are not medical advice
United Kingdom
Joined February 2026
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My diagram with all the things I did in case it helps anyone else . I did self inject b12 and B1 every other day, but I’m not promoting this as self injecting carries risk . I also won’t be able to answer any questions about doing this as it’s not under nice guidelines 1/
Dr LG retweeted
Outrageous response from @DHSCgovuk who're content to leave >1.3 mill sufferers of a "devastating illness" w zero treatment indefinitely. Many sufferers can't even access standard healthcare, a right everyone else in the UK enjoys
The plan & research funding changes nothing
1/n
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it.
Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
Dr LG retweeted
With mild ME/CFS, I was finally able to live again:
❤️ Marry the woman of my dreams
💻 Work part-time
🦁 Go to the zoo with my godchild
🎁 Attend family celebrations
🛒 Go grocery shopping
🚗 Drive short distances
It was a life again. Not a easy one, but a beautiful one.
And now, not knowing whether I will ever get that life back is tearing me apart. 💔
Dr LG retweeted
Heartbroken to announce the tragic sudden passing of Edogawa patient # 37 Anthony “Tony” Parmalee. It was a shock to all of us, as we watched him dramatically improve in Japan. He fought hard for almost 6 years. Fought, clawed, and struggled to take his life back. His wife Victoria was just one of those special people you just never forget. My heart breaks for her and I wish I could hug her and strip her grief away. Victoria I know he would want you to be ok and find peace and live a happy life. Don’t ever forget that on your healing journey, On behalf of all the friends you made in Japan, and all of the Japan patients, everyone in the group, we offer our deepest condolences and prayers for your recovery. The Parm had a highway to heaven and is in a beautiful glorious place. I am happy to celebrate the life of “The Parm” who passed suddenly of turbo cancer. His life will be celebrated Saturday December 12, 2026 in Ketchum Idaho. Life is so delicate, go outside and live it up when you’re having a good day. RIP TONY
For those of us in this battle together, stay on your toes, do not let your guard down, get to the lab often and check those immune cells as we discussed.
Dr LG retweeted
Sickening but all too believable as we have seen in the decades of treatment of ME.
“Misdiagnosed and heavily medicated, Alexis Quinn spent four years in psychiatric care before escaping to start a new life abroad”
archive.ph/2026.10.24-062515…
Dr LG retweeted
Totally agree. Fatigue isn’t a big problem for me outside of PEM. Almost the opposite. I’m restless & alert but acting on anything causes devastating PEM. Even emotions. To call this state ‘fatigue’ is ridiculous. Health professionals know near nothing about it.
If we could drop the word ‘fatigue’ from being the leading definition of #ME it would make a huge difference to the whole perception of this illness. People don’t die or take their own lives because they are fatigued. The name CFS was a political decision, a very dark decision.
Dr LG retweeted
💙 Thank you Beth for responding so clearly. We completely agree. It's an inaccurate & pitiful response.
SequenceME needs FULL funding @andyburnham @YvetteCooperMP not just the pittance its partially received. We cannot make progress with this approach.
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it.
Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
Deleted that message from my host as people were misreading it and thinking that I was no longer aware we are still in a pandemic.
Dr LG retweeted
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it.
Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
Dr LG retweeted
💌 Excellent letter by Beth Dobbin to @andyburnham Her post received 1.2 million views on IG!
Andy we urgently need:
1) NHS commissioned care for severe ME
2) Select committee inquiry
3) National clinical lead/Tsar
4) Research funding
+ more
ALT Image of an open letter from Olympic sprinter Beth Dobbin OLY to Prime Minister Andy Burnham, calling for urgent action on severe ME. Beth describes going from training five hours a day for the Tokyo Olympics to being bedbound for 22 hours a day following Covid-19 and glandular fever infections. She highlights decades of medical neglect, psychologisation, inadequate biomedical research funding and the absence of specialist NHS provision for severe ME patients. She also argues that investing in biomedical research could reduce long-term disability and welfare costs, and urges the government to fund research into ME so patients have a chance to regain their health. The letter closes: “From a fellow Northerner, Beth Dobbin OLY.”
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Dr LG retweeted
Managing post-exertional malaise (PEM) goes beyond pacing alone.
In this clip, Dr. David Putrino, Dr. Lucinda Bateman, and Dr. Jennifer Curtin share emerging approaches to reducing physical and cognitive PEM, including treatments targeting metabolic dysfunction and options such as low-dose rapamycin, metformin, oxaloacetate, CoQ10, dextromethorphan, low-dose naltrexone (LDN), NAD+, high-dose B1, and IV saline.
While some patients report improvements, responses vary, and research is still evolving. Identifying which treatments may help specific patients remains an important part of developing more personalized PEM management strategies.
Have you found any medications or supplements that help manage your PEM? Share in the comments.
Watch the full How to Manage and Treat Post-Exertional Malaise (PEM) webinar featuring Dr. Putrino, Dr. Bateman, Dr. Curtin, and moderator Charlie McCone.
Watch the full webinar here: na2.hubs.ly/H08vRL-0
Always consult with your healthcare provider before starting any new supplement, over-the-counter medication, or treatment. Individual risks, potential interactions, and appropriate dosing should be discussed with and monitored by your clinician.
Dr LG retweeted
Sigh. We just can't get away from this psychosomatic crap. Here, @TheNerveShow postulates that Celine Dion suffers from "Conversion Disorder" aka Functional Neurological Disorder aka Hysteria. This is her 'most likely 'conclusion - that sexual trauma somehow "converted" into Stiff Person Syndrome.
There is so much wrong with what is being said in this segment that it would take an essay to address. Jumping from miraculous recovery - to conversion disorder aka Hysteria - is ridiculously flawed and dangerous reporting.
SPS is an autoimmune condition and is diagnosed in part based on autoantibodies being present. It is very likely she was receiving treatments that are currently in trials or that have not yet made it into trials. She was a positive responder to IVIG, and while it alone did not cure her it enabled her to do physical therapy.
Just pop your question into @grok - detail the ongoing and upcoming clinical trials for SPS.
CAR-T is being trialled and talked about as a 'one and done' intervention for SPS. It is WAY more likely that Dion has received treatments not available to general public. Jumping to "Conversion Disorder" was frankly - disgusting.
Note: I am not a celine fan and after watching her documentary...well...I am really not a fan - what angers me about this is that it is so often women who jump to this type of bullying by other women. It would have taken you 3 f-ing seconds to ask AI about trials and to ensure that you did not spread disinformation.
Céline Dion’s “miraculous” recovery from an incurable disease.
Watch below and download the full episode: podcasts.apple.com/us/podcas…
Dr LG retweeted
This is what pwME need. Repurposed medicine trials on a large scale. Surely we have enough information to target systems by now?
bbc.co.uk/news/articles/cqly…
Dr LG retweeted
Dear doctors: you've got to stop punishing patients for how many specialists they've seen in the past, and being "complex". It's prejudice towards those who already struggle so hard to get care. It's NOT patients' fault those doctors didn't know how to help them. #Care4Complex
In an apartment which initially seemed lovely , but now I’m realising there is construction work going on. I really have the worst luck.
Dr LG retweeted
I'm absolutely heartbroken.
Another friend lost to #LongCOVID. How many more lives do we have to lose? How many more before this is taken seriously?
Absolutely heartbreaking to hear this morning that my mate Gavin @Gavtaraysin has gained his wings 🪽🥲
G was such a lovely person who always showed me support and kindness. I will miss my our chats, banter.
May he now rest in eternal peace ❤️
