Important calls to ME patients

dSavannah note: Don’t know what’s come over me to be posting again in the same week, but… again, this is important. Please spread it far and wide!


A global day of action for ME patients to share their stories. More on their site.

A global day of action for ME patients to share their stories. Will be 5.12.18.  More on their site.

Numerous, numerous! Myalgic Encephalomyelitis (ME) patients have become far worse – some now 100% bedbound! – after being forced to do treatments based on bad science, after being told the disease was in their heads (like Jen Brea), that they made it up, that they must not want to get better, and other terrible things.

Dr. Sarah Myhill, a UK physician, medical writer and researcher, is working on a complaint to the UK GMC (General Medical Council) about the amazing amount of harm one particular study, PACE, has done to ME patients across the globe. PACE has now been discredited, yet continues to be used, further harming ME patients.

If you are an ME patient or have a loved one who is, Dr. Myhill needs your help to help us all. In particular, she wants to prove that “PACE has created a general background environment of harm and neglect“.

If you have suffered in any way due to poor medical treatment, please visit this page on her site and follow the instructions to send in letters about your experiences. She is looking for worldwide responses. I’m also pretty sure she’ll accept letters from people without a concrete ME diagnosis if they were harmed in some way by the PACE guidelines.


Another way to help is to complete this survey on Post-Exertional Malaise (#PEM), which is being conducted by Leonard Jason, PhD, professor of psychology at DePaul University in Chicago, Illinois. PEM is a hallmark symptom of ME, and basically means utter exhaustion after mental or physical efforts that is far more than you might expect. (In my case, I’ll have to lay down for at least an hour in a dark room to recover from writing this very short post, most of which was copied & pasted.)

He writes:

Can you help define Post-Exertional Malaise (#PEM)? This short survey has been designed by patients with ME and the responses will be sent to #NIH in America. If you have a view about how PEM should be defined, then please complete the survey. (by, erm, tomorrow morning! eek! Get on it!)


Again, please share this all over. And do the stuff if you can.

Many thanks, your very humble and exhausted servant,sig

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in advocacy, chronicillness, giving to others, hard work, health, illness, making a difference, perseverance, shining a light, the dark places. Bookmark the permalink.

Whatcha think? Tell me, tell me!