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Just a note for anyone else who is doing this project. The previous instructions for what to write on postcards had an error in the URL. This has now been corrected on the meaction.net website. The URL for the CME course should be written with a slash and in lower case, like this -...

Thanks @hellytheelephant for your blog post on books! :)

For those who are curious, the line on the postcard that says "Untitled: Emily Lawton" refers to the design on the other side of the card. Patients are free to design their own cards. I saw a link to a template but I never clicked on it because I just went with the pre-designed cards. The...

So true! I had to practice several times on slips of paper to get my handwriting that small. But I finally managed to fit it all in! Here's a photo (with the doctor's name removed) CORRECTION: I wrote the wrong URL on the card. I edited the photo to show the correct address - unrest.film/cme...

I agree! I would hope that this thread provides inspiration (even small donations help), and hope (many small donations can add up and may lead to a breakthrough), but never guilt or pressure over not being able to donate money. I feel quite lucky that my financial situation has always been...

I got the doctors' addresses via email. I plan to write the first card today. :emoji_writing_hand: If all goes well I may even take a photo and post on twitter. :emoji_fingers_crossed:

I donate to a few different ME research and advocacy groups. Why? I guess the reason I give is selfish. I want to find a biomarker and effective treatments (as opposed to resting/pacing/coping with the symptoms). Maybe one day there will even be a way to prevent or cure ME. My donations may...

Thank you @NeilH for posting more of your thoughts. And my condolences on the death of your sister. I'm so sorry that you can't go to her funeral. I confess that it never occurred to me that any patient (with any chronic illness, not just ME!) would not even try to get out of bed (or try to sit...

I just got my first set of postcards in the mail. Yay! I'm going to try to write one a day, maybe one every other day. I expected to get a list of addresses for doctors with them but maybe those will come by email. I'll keep you posted.

Exactly. There have been times when I skip the shower so I can use that energy to cook something. It's a balancing act. As others have said, he has completely ignored severe ME patients who can't even sit up without overexertion. But even aside from that, I don't understand the advice to "Do...

Thanks for the update, Mike! :emoji_runner: You are amazing! :emoji_trophy:

A new project from ME Action: Note: Since the current CME is only available in the U.S., we are only providing addresses for doctors in the U.S. at this time. Read full details at https://www.meaction.net/postcards-to-doctors/

I think all medical professionals need some basic education about ME/cfs and PEM. Physios may need this training more urgently since they may be more likely to advise their ME patients to exercise without realizing the harm it might cause. But all doctors need to know this, right? For what it's...

I'm only moderate and this can be true for me. Which is why I rarely to go to the doctor (once a year to cardiologist to get refills of my prescription meds, and a bit less often to my primary care physician). I can't even imagine how horrible it must be to spend so much precious energy to see...

Welcome @PhysiosforME :) Can anyone tell me whether a physio (physiotherapist) is the same thing as a physical therapist? Or is there some sort of training / licensing difference? This Wikipedia article seems to say they are the same but I wanted to make sure that was correct. I see the term...

PS - I thought I'd add this note about fundraising for ME Action

Full article = https://www.meaction.net/2019/06/12/meaction-releases-an-updated-me-research-summary/ Direction link to PDF file = http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf Many thanks to @JaimeS and the whole ME Action team!

Thanks for all the links to those tweets, @Sly Saint ! :)

That's good news - thank you :heart:

Perhaps some sort of testing for Orthostatic Intolerance (eg, POTs or NMH) would be a good addition? The Bateman Horne center is doing research "comparing the effects of the NASA Lean Test in 25 Chronic Fatigue Syndrome patients vs 25 healthy controls." (research might be finished? not sure)...