John Duncan

"'No!' said Aragorn, taking his hand and kissing his brow. 'You have conquered. Few have gained such a victory."

[John Duncan @lamppostLighter]

Very well stated imo. #MyalgicEncephalomyelitis

Long past time to restore the correct historical and scientific name "Myalgic Encephalomyelitis"; to use the research definition which best captures cases–The Internatial Consensus Definiton (2011!)

Hope 🇺🇸 Orgs will agree... https://t.co/bSDlN6Bqc4

[Jeannette Burmeister @JKBurmeister]

@TurnItUp4ME @marilyn_ge @AnneSpaceCoast @AliceOutThere @JohnGaborME @John_CFS @MEflattened @herenow23 @JanetDafoe @GabbyKlein1 @carpat21 @CDCgov It's all part of the same house of cards. Everybody w/ CFS dx--whether or not they have ME--deserves a proper dx Those w/ CFS dx who don't have ME could possibly be cured if treated for what they do have. Not leaving anybody behind in the CFS swamp.

[sam @paintingsbysam]

Please donate or RT to help this severely ill child. This is barbaric.

#severeME is bad enough. Help this family fight for Gigi to get the care she needs. #standupforGigi https://t.co/1qYfE5WxQN

[Alison Orr ✝️🦋🏴󠁧󠁢󠁳󠁣󠁴󠁿💚🤍💜🎗️ @Wee_Bawbee]

#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC
https://t.co/BssyKVMon1

[Erik Johnson @erikmoldwarrior]

@lamppostLighter @postersandme @TinaRodwell1 Yes. We asked for that to be done from the start. I still don't understand why this OBVIOUS procedure was never made to happen.

[John Duncan @lamppostLighter]

@erikmoldwarrior @postersandme @TinaRodwell1 My personal, lay, opinion is that there were likely differences in how the outbreaks happened but it was the same disease.

Re: new tests Peterson & Cheney discovered-it's a shame there was never a comparative study between RF patients vs Tahoe ones. We would have learned a lot.

[John Duncan @lamppostLighter]

@SaraStapleton61 @AliceOutThere @postersandme @oslersweb Are they willing to go public with this story? I know the case of Sophia Mizra was well publicized but naysayers always call it a one-off...

And Sophia was, in essence, murdered by the U.K. government.

[John Duncan @lamppostLighter]

@erikmoldwarrior @postersandme @TinaRodwell1 I was under the impression Dr. Byron Hyde and the others who were most expert in Myalgic Encephalomyelitis considered it just that and walked out due to that very decision?

Didn't Hyde say the Lake Tahoe was clearly ME in one of his videos? ( among other places )

[John Duncan @lamppostLighter]

"Otherwise, the enterprise ceases to be genuinely informative, and becomes an exercise in belief confirmation."

Yep, and shamefully this particular exercise, PACE, has caused so much harm.

[Tom Kindlon @TomKindlon]

New open-access rejoinder:
"Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings"

This trial cost in the region of £5 million of UK taxpayers' money.

https://t.co/W2poVMlyAY

#MEcfs #CFS #ChronicFatigueSyndrome #PwME #MyE #PACEtrial

1/n

[John Duncan @lamppostLighter]

@erikmoldwarrior @postersandme @TinaRodwell1 What is absolutely incredible is there was a biomedical illness, though little known, discovered by Ramsay and others called ME already!

The only ways to claim psychogenic causation is to handwave it away, clearly unconvincing and unethical. Or to feign ignorance-unbelievable!

[postersandme @postersandme]

@TinaRodwell1 MP at the ME Parliamentary debate, when the full details of PACE become known, it will be considered one of the biggest medical scandals of the 21st century

[John Duncan @lamppostLighter]

@MEisNotFatigue @robhastings @profmsharpe @kkelland @ReutersUK @theipaper Only by hostile governments unwilling to fund their grants applications and by off-camera intimidation.

That is a real injustice and real story unlike the above.

[John Duncan @lamppostLighter]

@macanders If there were I'd want to leave this place and go there immediately ... maybe it's a good thing we don't know 😄.

It's nice to imagine it though.

[Eileen 🔊 @TurnItUp4ME]

@MBVanElzakker We r about 2 enter the year 2019, so it is way past the time 2 start saying what we DO know about #ME - and we do know quite a bit - and refrain from framing the disease like it's a mystery novel instead of an area of science 2 be further explored.

[John Duncan @lamppostLighter]

.@TurnItUp4ME would make an excellent CEO of @PlzSolveCFS 💙For #research. For #pwme.

Our lives matter.💙

Make it happen board of directors!

#PatientVoice

[Solve ME/CFS Initiative @PlzSolveCFS]

AN IMPORTANT UPDATE FROM CAROL HEAD AT SMCI
https://t.co/tCT2BdYJiA

#SMCI #SolveMECFS #MECFS

[John Duncan @lamppostLighter]

@AllisonDHaynes @CDCgov That says it all. And apparently some do!

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

FYI #pwME, @CDCgov took millions meant 4 M.E. research, misappropriated the funds for non-M.E. projects. Also wasted funds wheel-reinventing, making ever-more-vague "disease criteria" 4 #MyalgicEncephalomyelitis #MyalgicE & NOT worked on contagion/epidemiology. Still trust them ?

[John Duncan @lamppostLighter]

@LarissaFanTO @MEActNet It would be interesting to know the time scales involved. (Maybe in the paper?- I'm not up to reading it)

It might be for pwme that in the context of immediate exertion it doesn't go up enough but then afterwards it stays up instead of going back normal?

[Anil van der Zee © @AnilvanderZee]

Meta-Analysis shows Blunted Heart Rate Contributes to Activity Intolerance in People with ME https://t.co/HpyVEGxk20 @sunsopeningband how does this correlate with POTS? Heart Rate goes up with POTS.

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#pwME #HumanRights #DisabledRights #MyalgicEncephalomyelitis #MyalgicE

[Gabby Klein @GabbyKlein1]

NEW BLOG: The false media stories about the disease betray the ample scientific evidence that this is an acquired, infectious, biologically based disease which appears in the outbreak (50+ worldwide) and a sporadic form. https://t.co/9Yb69kGIJU