Jan 3, 2024
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" by David Marks (an eminent academic psychologist)
These are on my papers
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From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" by David Marks (an eminent academic psychologist)
These are on my papers
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
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George and his ME/CFS
By WantedAlive, drawn by Rick Menard to freely share and raise awareness for ME/CFS
The good news are, that the new NICE guideline of 2021 no longer recommends Graded Exercise Therapy (GET) as a possible cure for ME/CFS. Instead, it is acknowledged, that GET can do serious harm to patients.
So I’m still in a state of disbelief, but data doesn’t lie... Went to the gym again today, making my sixth recumbent biking session. Usually I bike at 45 rpm (pretty much the lowest before the machine goes to sleep) for about 8-9 minutes, with a heart rate around 95-100, and I feel pretty crappy to nearly passing out at the end. I’ve been working on NOT getting to the nearly passing out.
Today was different. I biked the whole 10 minutes at 65-70 rpm, heart rate in the 80s and felt alright at the end. Only difference? I started my beta blocker last night.
Don’t get me wrong, it was still challenging and very much felt like a difficult work out, but afterwards it felt rewarding and like some endorphins were pumping, instead of crawling to the car to lay down.
I’m not cured, but this was a major change.
“This debate helps highlight how existing behavioural approaches and treatments are failing patients.” Carolyn Wilshire.
I get a mention in this blog post by Dr Carolyn Wilshire, a psychology lecturer.
http://www.stopget.org/2017/04/missing-more-after-graded-exercise-therapy/ 22nd April 2017 by StopMAGENTAteam People with ME know that graded exercise therapy is very unpopular amongst patients and most of us have us have heard horror stories. However, this isn’t what the general public expect when they hear about it. The name does not match our experience: Graded sounds gentle Exercise, that’s good for everyone, right? Therapy has connotations of healing in a supportive environment Personal stories can be a useful tool for making a heartfelt connection with the general public, especially for a topic like this which is counterintuitive. For ME Awareness month (May) and Millions Missing we want to share your experiences of graded exercise therapy. We will post your story here and share in various places online. If you or someone you know has a graded exercise therapy story to tell: Email [email protected] your story in a couple of paragraphs. Points to consider If you’ve already written a suitable blog post about GET, the most energy efficient solution is to simply send us the link and we’ll repost it (perhaps you want to add a bio paragraph to promote your blog?). If you are writing something new, these are some pointers: Concrete examples of how your health and limitations changed are helpful (or perhaps there was no difference?). How did you feel after GET? Did it stop you doing certain activities? How long did the impact last? How did medical staff respond? Were you allowed to stop the treatment without consequences? Imagining that the person reading knows nothing about ME could help you explain. Do you have pictures you are comfortable sharing? Visible before and after GET changes would be particularly poignant. Your story will be shared widely. Do you want to use a pseudonym or do you want to use your real name (plus contact details)? Please make this very clear. Please also ask people you know who have a powerful story to contribute. We are particularly interested in hearing about children who have done graded exercise therapy. A specific hashtag for this is #MissingMoreGET So we can share on social media with various combos of #MissingMoreGET and #MillionsMissing #MEawarenesssmonth #stopGET #May12 etc To get updates when Missing More posts are published, follow us on: Twitter: @stopGETteam / @MEActNetUK Facebook: www.facebook.com/stopGET or www.facebook.com/MEActNetUK
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
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This cartoon is taken from the book "It's good to laugh" volume 1.
It was sold in aid of ME research by Graham Kennedy via the 25% ME group.
The book has sold out now and is out of print.
Here is a list of research funds in the spirit of why it was written: http://phoenixrising.me/resources-2/research-charities
I overdid it at the gym today and I got really lightheaded and I thought I might pass out. Oops. I knew that getting my heart rate over 100 for an extended period of time was a recipe for disaster, at least in the past, but the thing was...
I made this new workout mix of all lady vocalists including all three of Janelle Monáe’s new singles and they are just SO GOOD. And my little queer heart is like, I’m not slowing down during Janelle’s bi anthem!
I used to get in trouble with pushing it too hard when exercising and a really good song would come on (or when doing Just Dance...), but that was in life before POTS. Dysautonomia doesn’t fuck around. Limits suck, but I can turn up the Monáe as long as I don’t pedal faster.
Even though that’s reallllly hard.
I had a super bad gym week last week. As in, I went once instead of the goal SIX TIMES. I’ve yet to make the goal, more because of other life stuff than capability, but still, once was not too hot.
The reason I only went once was some emotionally traumatic news on at the gym on the day I did go that took me a few days to physically recover from. It’s shocking to me how my body is able to recover overnight (now) from a day of physical exertion, but took multiple days to recover from emotional exertion.
Mental/emotional shit is real, my friends.