And then there are those of us on the fringes who have no skin in the game, but are very concerned about what we see, but are helpless to do anything, and worried that anything we might try to do will just make everything worse for the person we are trying to help. 😖

I recognise that there is a conflict here, between orgs that provide advocacy (need to adhere to strict protocols for privacy, confidentiality, etc) and individuals providing advocacy (as friends or fellow sufferers, for whom those boundaries may not seem so apparent). There is too big a void.

First paid staff member will see ME Support reach more people. belfastmedia.com/milestone-fo...

There he is, Holmes. Do you know which 2 cancers were related to chronic EBV?

The Lansing State Journal, US. 8th February 1989. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Baltimore Sun, US. 8th February 2010. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Republican, Massachusetts, US. 8th February 1991. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

Chicago Tribune, US. 8th February 1987. #ebv #myalgice #myalgicencephalomyelitis #chronicfatiguesyndrome #cfs #cfsme #mecfs.

The Journal, Newcastle, England. 8th February 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

The Coventry Evening Telegraph, England. 8th February 1995. #cfsme #mecfs #myalgice #myalgicencephalomyelitis

The Dorset Echo, England. 8th February 1990. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

"Some sufferers are so depressed when they are told their condition is psychiatric that they commit suicide." Wales on Sunday. 8th February 1998. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Daily Telegraph, UK. 8th February 1990. #cfsme #myalgicencephalomyelitis #myalgice #mecfs

The Daily Mirror, UK. 8th February 1990. #mecfs #cfs #myalgice #myalgicencephalomyelitis #cfsme.

Community members interested in supporting the bill can submit testimony in its favor today and then again on Tuesday. More details about how to do that are in the story. thesicktimes.org/2026/02/06/m...

Maryland's legislature is considering a bill that would support grants and loans for Long COVID research and development, building on an existing state program. Hearings are happening next week! More from me @thesicktimes.org: thesicktimes.org/2026/02/06/m...

Maryland is considering a Long COVID innovation bill that would support grants and loans for Long COVID research and development, building on an existing state program. bit.ly/4aisb6v

The Macon Telegraph, US. 7th February 2021. #longcovid #myalgicencephalomyelitis #myalgice #mecfs #mecfs

Newsday, New York, US. 7th February 2024. "5.8m kids got long COVID" - two years ago today. #longcovid #myalgicencephalomyelitis #myalgice #mecfs

The Herald-News, New Jersey, US. 7th February 2022. "The more Strazza tried to push through, the worse he got" #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Guardian, UK. 7th February 2002. Ex-Revolutionary Communist Party member Dr. Michael Fitzpatrick (powerbase.info/index.php/Mi...) has his Spiked article about #myalgicencephalomyelitis reprinted in The Guardian. #myalgice #cfsme #myalgice

In between a repeat of a Doctor Who episode from September 1968 and a programme including future Diana, Princess of Wales interviewer Martin Bashir is a show that includes an 'Ean', diagnosed with #myalgicencephalomyelitis The Daily Telegraph, UK. 7th February 1992. #myalgice #mecfs

Midweek, Buckinghamshire, England. 7th February 1995. #cfsme #myalgicencephalomyelitis #myalgice #mecfs

The Sunday Sun, Newcastle, England. 7th February 1993. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Coventry Evening Telegraph, UK. 7th February 1990. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

Hier kann man sich die Interviews des NDR zu #MECFS nochmal anhören. Mit C. Scheibenbogen, Pascal Hillgruber (Erkrankter), Tanja Strieder (Medizinerin) und Sarah Müller (Dt. Gesellschaft für ME/CFS). www.ndr.de/ndr2/epg/NDR...

Authors include Robert Naviaux, Carmen Scheibenbogen, and Bhupesh Prusty Closing in on the causes of PEM 🎯 #MECFS #LongCovid #ImmuneDysfunction #Mitochondria #AutoImmunity

Physios for ME have launched an international survey exploring the experiences of hyperbaric oxygen/oxygen therapy for people with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) www.physiosforme.com/o2survey

Thirty years ago today. The Indiana Gazette, US. 6th February 1996. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Arizona Daily Sun, US. 6th February 2001. #mecfs #cfsme #myalgicencephalomyelitis #cfsme

The Salt Lake Tribune, US. 6th February 1997. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Reno Gazette-Journal, US. 6th February 2013. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

The Evening Post, Nottingham, England. 6th February 1992. ##mecfs #cfsme #myalgice #myalgicencephalomyelitis

Doctors said she had anorexia, she claimed she had #myalgicencephalomyelitis. The Citizen, Gloucestershire, England. 6th February 1992. #cfsme #myalgice #mecfs

The Daily Telegraph, UK. 6th February 2010. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

Whenever there's a new service in northern England I look it up and discover it's staffed by the same people who were completely unhelpful before.

Like so many said from the start, because this is not new, but the defining feature of this era is to never listen to people who predict things accurately, and instead promote the people who got it completely wrong, and health care is no different at that.

Bit of a red flag is that the clinical lead (Janet Scott) for the Highlands service is a big fan of Jon Stone. 😱

. @meactionuk.bsky.social have provided access to each health board's outline of the service they intend to supply. meaction.org.uk/media/health... Lots of physios, OTs and psychologists, and little of anything else, as usual.

Beyond Blood Tests: Doctors Look to Cell Engines to Explain Chronic Fatigue. www.openpr.com/news/4376010...

ME/CFS: Demand for Better Care. www.vol.at/me-cfs-deman...

New service for Highland chronic fatigue syndrome sufferers. www.bbc.co.uk/news/article...

In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome. www.bizjournals.com/sanjose/bizw...

The Courier, Iowa, US. 5th February 1990. "'Yuppie flu' becoming more prevalent problem" - thirty-six years ago today. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

The Ottawa Citizen, Canada. 5th February 2007. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Reno Gazette-Journal, US. 5th February 2009. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

The Santa Maria Times, US. 5th February 2014. #mecfs #myalgicencephalomyelitis #cfsme #myalgice

The Iowa City Press-Citizen, US. 5th February 1998. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

Dr. Jon Van Cleave claims to have a cure for chronic fatigue syndrome on this day thirty-four years ago. The Des Moines Register, US. 5th February 1992. #myalgicencephalomyelitis #cfsme #myalgice #mecfs