Search results

Her cognitive impairment was huge. Prior to developing ME, after viral labyrihthitis, she had been studying Maths and other A levels. She had 3 separate periods of improving after certain antibiotics. The first was twice weekly i/m injections of penicilin for c 8 weeks. Towards the end of this...

This is the message that LCA (Long Covid Advocacy) are promoting: 'Over 2 million people are suffering from Long Covid, facing debilitating symptoms that rob them of their health and quality of life. The economic impact is staggering. We must urgently fund research to uncover its cause, find...

My daughter, who has ME has found that Daridorexant, the orexin (wakefulness) receptor inhibitor helpful for her sleep. Her delayed sleep onset has come down to about an hour, from 2-3+ hrs. Also, when she wakes, which happened frequently, she goes back to sleep much more quickly and seems much...

Summary of the process: https://docs.google.com/document/d/1r4xXiJvxXn2UUy2YgrIleUKOOsOAOhVGSsQVwbEYjE0/edit?tab=t.0

It has absolutely nothing alongside his name under 'field of business', which seems appropriate to me.

Well done. Is she a member of the APPG?

BACME have recently recruited another carer to this group. I do not know any background to this guy, other than he is the same carer group as Ceri Rutter, their main patient rep. If anyone was interested, they could contact to ask them if they want more

Apologies if this has been mentioned and/or is in the wrong place. This Long Covid article includes numerous videos and narratives about PESE/PEM, some of which could be helpful in explaining the nature of PEM to family/friends/clinicians/DWP...

Figure 3 in their paper shows that concentration of the Herpes virus DNA was highest for HHV-7, than HSV-1, EBV and HHV6B. "To investigate viral persistence, the proportion of samples from each participant that were HHV-positive over the time course was determined (Figure 3B). HHV-7 was...

Excellent video, thanks for sharing. He mentions palpitations when walking a few feet in his garden in the garden. Some POTS meds might well help. Beyong tragic that all the LC and ME clinics have just been merged into "fatigue" ones.

Another great video Adam and thanks to John for your work as well

Does include Nathalie Hilliard, one of the 4 Physios for ME and a person from LC Scotland in the authors. Uses HR monitoring: "During enrolment in the study, participants were allocated time and heart rate (HR) limits of attempting to spend no more than 30 min per day above 60% of their...

@MBailey has anyone from ForwardME been invited?

Sometimes I find it useful to use other terms eg when explaining the issues to HCPs, DWP, some friends etc. This is from MEpedia: https://www.me-pedia.org/wiki/Cognitive_dysfunction#:~:text=Forms%20of%20cognitive%20dysfunction%20commonly,information%2C%20difficulty%20sequencing%20words%20and...

Not a magic recovery story: "Over time, Clarke slowly found her way back to writing. She learned to manage her symptoms, and discovered she could stay on track by working in 25-minute bursts. Her brain fog receded." Re her second novel in 2020: "The philosophical puzzle at the story’s center...

Can you get those using a 3D printer?

How are we going to get that evidence? You won't find many volunteers to test out the theory. We know that Whitney needs Ativan to survive trips to hospital, for changing his PEGJ and it's unlikely to be as far away. Others, some even with moderate ME find travelling any distance in a car...

Thank you so much @MBailey

People who know about s/vs ME (such as 25%) were involved in the working group and workshops for the Living with ME stream, and submitted very relevant material. Have no idea what the final plan will include.

What could they do about this? Other than have a statement on their own website?