Twitter | Search | |
Search Refresh
Oksana Z 10h
Replying to @keithgeraghty
Recent appt with "specialist" who drew this picture and lectured me that I'm stuck in the vicious circle of stress/anxiety causing my symptoms! And suggested 'date nights' with my husband. No discussion on helping me to manage my debilitating symptoms!
Reply Retweet Like
Mark Rager Nov 16
Why the f*** are politicians if they should speak about the serious organic disease even more silent as desperately suffering patients who fight to death? Temporary mutness or ignorance, neglect & callousness? It's a disgrace! ACT! via
Reply Retweet Like
Jeff Schwartz 33m
But please don't forgot to attend to the medical needs of patients as well. Attending to must be accompanied by appropriate biomedical care to provide good outcomes. patients are still waiting for KP to provide evidence-based medical care.
Reply Retweet Like
Karen McAulay Nov 19
Hopefully near the end of my first crash, a year lost, still a lot gained. I still feel very lucky and after watching and seeing the work of I'm inspired to do something positive.
Reply Retweet Like
Bridget Willard 24m
I am home with a fever. I guess I pushed myself too hard lately. Sometimes, I forget I have a chronic illness.
Reply Retweet Like
ME Foggy Dog 2h
This chest pain rubbish can do one! Laughed throughout my Stripy meeting....thanks adrenaline. Laughing has caused my ribs to HURT. Now on BED in pjs with a movie
Reply Retweet Like
AmaraK12 5h
Wearing a pinstripe shirt today and I can see the stripes moving in my peripheral vision. This is the only illness I've known where your own clothes can make you feel sick!
Reply Retweet Like
Sabrina Poirier Nov 7
Watching the wonderful on one of the 2018 Community Symposium videos from the ! Sending a virtual hug back Janet. Thank you for everything you and Ron do to support patients. We are so thankful. 💛💛💛
Reply Retweet Like
Not Just Tired Nov 8
✨New on my blog: “When life gets in the way of our routines.” I wrote this blog after struggling with my emotions this morning & to highlight the reality of some of the day-to-day struggles of dealing with .
Reply Retweet Like
#MEAction Network AU Nov 8
An open letter to Michael Sharpe signed by members of the Oz community. Oz patient Alem Matthees was responsible for the FOI request which led to the PACE trial data being released. He was very sick during the FOI process & it cost him dearly.
Reply Retweet Like
Fane Mensah Oct 22
The full paper is out now! CD24 Expression and B Cell Maturation Shows a Novel Link With Energy Metabolism: Potential Implications for Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Reply Retweet Like
Sonya Nov 3
I just emailed NICE to urge them to reform the biased committee that is harming patients. It was SO EASY! Took less than 3 minutes! Please click on the link below to take action now! Email :
Reply Retweet Like
Jamison Hill Nov 9
Replying to @NotTheWhiskey
The good news is: (and ) has some good exposure coming!
Reply Retweet Like
Mark Vink Nov 3
Dear please read this reanalysis of a Review shows you that ineffective exercise therapy has been sold as effective based on seriously flawed trials like the
Reply Retweet Like
Jamison Hill Nov 7
I’m well enough that I may be able to travel to see a new MD. Problem is: The wait to see an and/or specialist takes forever. Choices are: Wait till Oct ‘19 or take appt. in 2 weeks. I’m not prepared for the latter; guess I have to wait a year 😡Any advice?
Reply Retweet Like
Emma Joy Nov 7
To be clear ‘expert witness’ doesn’t mean much in the grand scheme of things. They aren’t part of the guideline development group. They can only provide evidence which could then be ignored!
Reply Retweet Like
ME Life In a Tweet Nov 16
My tinnitus is so bad today I feel like the aliens are trying to communicate.
Reply Retweet Like
Paul Watton Nov 3
When a journalist fails to do his job properly & consequently presents an ill-informed viewpoint as fact, his employer ought to be really concerned. Throwing M.E. patients under the bus is a serious betrayal of the values which I thought The Guardian stands for.
Reply Retweet Like
Sten Helmfrid Nov 9
Statement from The ME Association about the NICE guidelines: “We believe that many of the key recommendations are unfit for purpose – especially those regarding the use of CBT and GET for everyone with mild or moderate ME/CFS.”
Reply Retweet Like
Grace 19h
He went to too! Him and Dr Davis could go down in history for the good they’ve done even more, when they find a cause and cure for this horrible illness!!!! 💙
Reply Retweet Like