@Sebelius Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack
@HHS_DrKoh Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack
I am very sick after yesterday’s CFSAC “webinar” from hell. I had to cancel my flight to go home to see my 3-year old girl and my husband, Ed.
I will write about yesterday’s CFSAC “meeting” once I recovered from its torture. In the meantime, how about tweeting the above. I have never seen the patient community that united. Ever. Thank you, Dr. Lee.
Yes, Jeannette, there is always a ‘flip-side’ to a given situation . . . and HERE IT IS — UNITED WE STAND for the JUSTICE with this disease of ME/CFS.
It is with repeated UNjust actions ‘against’ (us) that we are able to see and KNOW the TRUTH of how UNjust these actions/lack of actions really are**–that we REALLY ‘GET IT’ !! Thank you, Dr. Lee for wrapping that all up in a bow for us.
**For it is with the basic goodness of human nature @ our very core that we may, initially, not want to believe that this is really happening (to us). After ‘much evidence’ and a REALITY CHECK–the ONgoing OPPRESSION of p/w ME/CFS is BLATANTLY OBVIOUS!!!
So very sorry to know of how sick you are feeling with all the exertion required from a person with ME/CFS, and I hope soon that you will be able to fly home to your 3-year old wonderful little girl and husband, Ed.
Thank YOU, Jeannette!!
(I’m not a ‘tweeter’–happy that many others ARE.)
Just tweeted, thank you. Hope you feel better soon.
I just looked at the on-line petition thanking the ME/CFS Experts and quote as follows:
“Mr. Stephen Gabriel, United Kingdom
Dec 12, 04:23
# 1,212
ME/ CFS research is being suppressed throughout the UK an USA too. UK research on ME/ CFS by the UK medical research council has been sealed for the next 70 years by the uk government. they only do that when they want to hide something. In 70 years this generation of ME/ CFS sufferers will be dead. Well done to those who are standing up to this global government denial of an illness that is ruining millions of lives.”
A COLOSSAL cover-up against humankind . . . ???
I was listening to the webinar in my car and when I reached the top of the hill I lost reception. I was so disgusted I didn’t even call back. Hope you get some energy back soon. Thanks for all your advocacy
Yes, I look forward to transcripts, assuming that there will be transcripts of the webinar.
I want to thank you so so much for all you’ve done so far. For your sharp analysis and strong advocacy. For your know-how and your effort. But most of all for you putting your health on the line for all of us.
You and other advocats bring us together, keep us focused and more determined than ever.
Weak bodies with extremely strong minds and large in numbers.
Thanx also to your husband for his support and to your family for having to experience all this is costing you.
Hope you’ll return soon to à liveable and bearable level of functioning.
Hope you recover soon and can see your family!
Jeannette, we thank you, but please take care of yourself. Stress is the worst exacerbator of this disease, even mild stress. I can only imagine the gargantuan stress of the webinar on someone who sees through the veneer and is striving for the truth to be told and the sufferers helped. Hope you get home to your family for the holidays coming up.