Evan Francis, a regular columnist in our quarterly ME Essential magazine, has been making it into the news herself – writing for The Daily Telegraph on November 18 and appearing in a BBC video which was put online today.
In the short BBC video, Evan appears with the ME Association's medical adviser, Dr Charles Shepherd. They explain how their intimate knowledge of M.E. can help many sufferers with what's become known as post-Covid syndrome improve their health.
Evan, a 24-year-old fashion and beauty blogger who works in the communications industry, is pictured walking in her local park and then sitting at a bench.
She says: “You'll have a really good day and you'll think I'm cured and you'll run around and tell everyone that you're cured. But, actually, three days later you're going to be in bed, not able to talk and you're going to want to just sleep and recover.”
In September, Dr Shepherd was called into an urgent meeting by a special adviser to Health Secretary Matt Hancock to share knowledge about M.E. The meeting was prompted by the emerging crisis that still affects thousands of people whose health has been wrecked – months after being infected by Covid19.
The vast majority were never hospitalised because they were never considered sick enough. And many are young people, often said to be at low risk of complications from the coronavirus.
On the video, he says: “It is very difficult for these people. They've never had any sort of illness like this which has had such a devastating effect on everything that they can do do. They're confronted by the uncertainty of what is causing this illness, what this illness is.
“It is reassuring to know that it is being taken very seriously at a high political level.”
Since the initial meeting in September with the Department of Health and Social Care, Dr Shepherd has also taken part in a roundtable discussion chaired by Health Minister Lord Jim Bethell on all aspects of the Long Covid crisis. It looks as though these roundtables will continue.
NICE, the health treatments regulator, is expected to publish the draft of its emergency guideline on Long Covid later today.
In the Daily Telegraph on 18 November, Evan explained why she welcomed the publication of the new draft NICE guideline on ME/CFS – which now recommends the scrapping of graded exercise therapy as a treatment for the illness and drastically reduces the role of cognitive behaviour therapy.
Ev, who was diagnosed with ME in 2017 when she was 21-years-old, wrote:
“I think this represents a clear win for the ME community, who have been overlooked for too long. It’s a stepping stone for more research, understanding, and possible treatments becoming a reality for people like me.
“I’m also grateful that newly diagnosed sufferers will not experience the worsening of their symptoms due to GET. However, there is so much more research to be done into the condition and the guidelines do not go far enough. ME is not a one-size-fits-all condition, and neither is the method for treating it.
“Mine has been a difficult journey. Before my diagnosis I was working 12 hour days and travelling a lot for work. I started getting pins and needles in my hands, legs and feet, and I was exhausted all the time: it didn’t matter whether I went to bed at 6pm or 6am.
“Eventually, I was signed off work and a doctor put me on a course of B12 injections. When they didn’t help, I was referred to a neurologist who ruled out more serious conditions. It was a terrifying time.
“When I was eventually diagnosed with ME, my neurologist recommended a course of CBT and GET and I was give an information pack that outlined how I should build up my exercise regime. It said things like “If you can manage to walk up the stairs, go for a walk outside. Then, try walking on a treadmill”.
“Yet this has never been an effective way of treating ME, and it made my symptoms worse.
“Prior to my diagnosis, I would be in the gym several times a week. When I followed my neurologist's advice and tried to go back to my aerobics class, I nearly passed out in the changing room.
“On another occasion, I tried power-walking 15 minutes from the office to the train station, because I had been told it might make me feel better. Instead, I ended up fainting on the train. It doesn’t help that every medication I’ve been recommended for ME causes side-effects such as drowsiness and dizziness. Often, exercise feels near impossible.”
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