Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Joined September 2017
- Tweets 6,663
- Following 1,304
- Followers 8,153
- Likes 17,205
1,734 Photos and videos
Pinned Tweet
Jan 19
My #MECFS scandal explainer video has just passed 200,000 views.
Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.
medium.com/@abrokenbattery/m…
16
159
438
27,428
Jun 13
Clip from Irish TV. Jackie talks about living with #MECFS and how moving from Dublin has helped make her life easier.
2
5
26
1,130
Jun 12
Clip from German TV. A #LongCovid patient is screened for Post-Exertional Malaise. Clinicians conclude she does not “deteriorate dramatically after very little physical exertion” and recommend a Post-Covid rehabilitation programme.
6
11
47
3,974
Jun 12
Good to see patients being screened for PEM. I’d be interested to know more about how patients are assessed. Subtitles by Fiona Hart.
Original video - Post Covid: Help from the Exercise Doctors - 16 Sept 2025
ndr.de/fernsehen/sendungen/v…
YouTube
youtu.be/tI80VQCMt04?si=8JZI…
2
1
15
422
Jun 11
TW: Caroline Roberts, who has very severe ME/CFS, was admitted to hospital after becoming unable to maintain adequate nutrition and hydration. There is now concern she may be discharged without receiving the care she needs.
I’ve just signed the petition.
change.org/p/save-caroline-r…
4
29
62
1,434
Jun 11
The ear seeds controversy was about #MECFS @richardosman @MarinaHyde
What makes it worse is patients have been prescribed ineffective and harmful treatments for decades (only recently withdrawn in 2021). George Monbiot calls it the greatest medical scandal of the 21st-century.
Jun 11
Very brief mention of the ear seeds controversy during a discussion about Stephen Bartlett on The Rest Is Entertainment.
This relates to Stephen Bartlett’s investment in an ear seeds business whose founder claimed they aided her recovery from ME/CFS.
1
9
27
876
Jun 11
People with ME/CFS have no effective treatments and are often left desperate for anything that might help. Please read George’s article to understand more about the history.
theguardian.com/commentisfre…
4
14
375
Jun 11
Very brief mention of the ear seeds controversy during a discussion about Stephen Bartlett on The Rest Is Entertainment.
This relates to Stephen Bartlett’s investment in an ear seeds business whose founder claimed they aided her recovery from ME/CFS.
4
9
40
3,763
Jun 11
ITV’s This Morning covered the backlash following the episode of Dragons Den
youtu.be/2zp9HQVgdRI?si=vuen…
More info:
me-pedia.org/wiki/Acu_Seeds
Podcast:
youtu.be/_uYEPVxkw2s?t=932&s…
2
12
529
Adam retweeted
Jun 11
"There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. tinyurl.com/efww9ntj
7
59
92
8,329
Jun 11
Why #MECFS is so misunderstood. A quick history lesson from neurological in the 60s to being reframed as psychological and fear of exercise. Treatments were only withdrawn recently after patients reported harm.
Clip from Zoe Madden-Smith’s award-winning RE:News documentary
May 30
“I don’t think I can think of another condition that would be treated this way.”
Dr Anna Brooks, Liggins Institute.
A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS
Also featuring @rhirhiarhii
5
69
190
7,516
Jun 10
“ME can be invisible, it can be unpredictable, and it can be isolating. So we should do our best as public and professionals to support those people as much as we can.”
Dr Ranj on how to help people with ME/CFS
Clip from BBC Morning Live.
Jun 8
Dr Ranj explains the four symptoms required for a diagnosis of ME/CFS: debilitating fatigue, post-exertional malaise (PEM), sleep disturbance and cognitive difficulties.
If you’ve had these symptoms for over three months, speak to your GP.
Clip from BBC Morning Live.
26
93
2,726
Jun 9
“Twenty years on, I came back to campaigning for sufferers of ME only to find that almost nothing had changed.”
MSP Helen McDade speaking about #MECFS in the NHS debate in Scottish Parliament.
Jun 7
“If I went to an appointment and came away without one of us being in tears or absolutely furious, that was not too bad.”
MSP Helen McDade speaking about her family’s experience of #MECFS in the Scottish Parliament.
2
57
185
3,950
Adam retweeted
Jun 9
Here's my first post about that Wired story: virology.ws/2026/06/09/trial…
5
49
146
10,058
Adam retweeted
Jun 8
Just sharing again. It’s so good. Thanks Adam youtu.be/RiwX9Y0NbiQ
2
13
39
1,944
Jun 8
Dr Ranj explains the four symptoms required for a diagnosis of ME/CFS: debilitating fatigue, post-exertional malaise (PEM), sleep disturbance and cognitive difficulties.
If you’ve had these symptoms for over three months, speak to your GP.
Clip from BBC Morning Live.
Jun 3
“Chronic fatigue is not the only symptom. It is one symptom amongst so many others.”
Dr Ranj explains what ME/CFS is, why the term Chronic Fatigue Syndrome does not reflect the reality of the illness, and why many patients prefer the term ME.
14
45
172
12,254
Jun 8
Full segment (9 mins):
youtu.be/HHzVXSVvi4o?si=AOju…
New BBC webpage on #MECFS
bbc.co.uk/articles/c3d2j8jd0…
1
7
685
Jun 7
“If I went to an appointment and came away without one of us being in tears or absolutely furious, that was not too bad.”
MSP Helen McDade speaking about her family’s experience of #MECFS in the Scottish Parliament.
Jun 6
“Perhaps the most damaging experience of all though is not simply the illness itself. It is not being believed.”
MSP Morven-May MacCallum speaking about her experience of Lyme disease and other chronic illnesses, including #MECFS, in the Scottish Parliament.
3
49
185
7,627
Jun 7
ME/CFS highlights from the NHS debate in Scottish parliament
youtu.be/ljOYGbJjp9c?si=zLPz…
Transcript
parliament.scot/chamber-and-…
1
4
15
558