Twitter | Search | |
Search Refresh
MEmyselfandWhy Sep 23
„it‘s been MONTHS!“ - Yes,and for patients,it has been like this for YEARS.
Reply Retweet Like
Colleen Steckel Sep 21
Replying to @meaktuell
This US petition goes along with that one. Anyone in the world can sign. We are still collecting signatures. Giving up is not an option as patients suffer & die from .
Reply Retweet Like
Allison 19h
Dr. Hyde's book "Understanding " now finished, final details being sorted re distribution. Nightingale Foundation website hasn't been updated since 2018 so patience is appreciated. Book can still be pre-ordered from there. See more @ MEGlobalChronicle & MECentraal.
Reply Retweet Like
Kristina Osobka 7h
Today is our wedding anniversary. Sept. 29 2012. We BOTH have a myriad of severe chronic health conditions & in spite of everything, we still somehow find joy I love you w/all my heart.
Reply Retweet Like
Colleen Steckel Sep 26
Replying to @Cov19longtail
Experts in put together a guide 4 drs/patients. guides drs on testing (pg 11) and gives management tips for maximizing broken energy production (pg 16). Link to IC primer here:
Reply Retweet Like
ME Caregiver @ home 🏠 Sep 27
"I have seen African children suffering from starvation, met people dying of , patients paralysed from the neck down, others in the last stages of terminal cancer, but I had never seen a living person as desperately ill as Lynn Gilderdale"
Reply Retweet Like
ME Caregiver @ home 🏠 Sep 27
doesn't stop at borders worldwide the same humanitarian catastrophe the personal destiny is similar so that the disease isn't difficult to recognize. The Hidden Story of in Japan:
Reply Retweet Like
Tom Kindlon Sep 26
Comment by Julian Elliot, chair of Australia’s National Clinical Evidence Taskforce on "When won't go away" on AM (ABC Radio) was also interviewed
Reply Retweet Like
Alice Lewis 36m
<5% recovery ☠️ And yet this disease is relegated to the wastebin 🗑 and so are we. Lowest Quality of Life as The Living Dead 💀 Now that is some SHAMEful health *care*. 🆘 🆘 🆘
Reply Retweet Like
Tom Kindlon 14h
"The founder of the Long Covid Support Group, Claire Hastie, warned that GPs were regularly misdiagnosing ongoing problems as anxiety or ME" - I'm not convinced one can say all diagnoses of ME in are misdiagnoses
Reply Retweet Like
Allison Sep 24
Unsure about references to per Ramsay et al ? Pls read this article. 1987: Press announces Ramsay, "vindicated" 30 yrs after Royal Free outbreak. 2020: Advocates & researchers STILL use disease criteria w "cfs" construct that brought this progress crashing down.
Reply Retweet Like
Allison Sep 27
1/2 Another great artifact from : 1988 article on , w usual biased headline, hides good info: testing being done in UK. Next step was to be genetics. What did happen next: Infectious disease research shut down, $$ to "darlings" genetics & psychiatry.
Reply Retweet Like
Allison Sep 24
Read this **1987** article. Then pls stop demonizing those of us who've had M.E. for decades & are justifiably fed up w govt's and advocacy orgs & their me/cfs conflation. We are not out of touch w current science, not being "divisive". Science must not ignore history.
Reply Retweet Like
Dan Wyke Sep 23
As we enter a new period of lockdown, please remember that lockdown never ended for a lot of people with a chronic illness like . Being homebound/ bedridden, without access to proper medical support, is the norm for many ppl with ME/CFS.
Reply Retweet Like
ME Centraal 21h
News on behalf of Dr. Byron Hyde The final version of the book “Understanding ” is finished. via
Reply Retweet Like
Tom Kindlon Sep 27
Latest "News in Brief", summarising ME/CFS and related news for the week starting 21st September collated by , Kalliope and others. <>
Reply Retweet Like
Lisa_Cat Sep 23
To raise as much awareness of M.E, as possible we believe that not only do those with experiences of the illness have to play their part, but also those who are willing to listen and help our voices be heard.
Reply Retweet Like
Kathy Collett 24h
The latest published paper by Griffith University using non-weighted MRIs found increases in Tw1 and Tw2 in white matter and basal ganglia problems in Graded exercise is damaging and would not benefit their finding.
Reply Retweet Like
Jacquie Wilson 🦋 🦘😷🇦🇺 #WearAMask!! Please RT Sep 25
New FDA Recommendations re Mercury containing dental amalgams! 👇 I bet patients should be in this group too! “People with pre-existing neurological disease such as multiple sclerosis, Alzheimer’s disease or Parkinson’s disease.”
Reply Retweet Like
Allison Sep 26
Unfortunately have , fortunately in Canada. Dx, Dr.AnilJain 1990. SPECT & EV testing, Dr.ByronHyde 2016. In Andrew Pellegrini's QEEG study 2018, below. All physical proof of Testing & differential Dx needed for ALL whether M.E. or other illness.
Reply Retweet Like