Christine Jones @Chrissieboots

To @sainsburys - "I want my supermarket to take the future of our planet seriously - please take more urgent action on plastic." Chris #couldntcareless

When the prevailing narrative is that #MEcfs is a due to “false illness beliefs” it’s almost impossible to self advocate. So grateful to MPs such as @CMonaghanSNP & @NickyMorgan01 who have led the way in championing #PwME & securing today’s #MEdebate #MillionsMissing

Amazing News! Carol Monaghan MP has been successful with her application for a House of Commons Main Chamber debate on ME as she announced during a Forward ME Group meeting yesterday 👏 It is unclear when the debate will take place, but we will keep you updated! #Medebate #pwME

PLEASE retweet so we can all email them with our valid concerns ASAP. Thank you! @keithgeraghty @MEActNetUK @meactionscot @MEActNetAU @MEActNet @EmergeAus @MEAdvocatesIre @davidtuller1 @JoanMcparland @Wee_Bawbee @carolbinks @TomKindlon @CoyneoftheRealm @OpenMedF @velogubbed

NICE @NICEComms

7 years ago

PLEASE retweet so we can all email them with our valid concerns ASAP. Thank you! @keithgeraghty @MEActNetUK @meactionscot @MEActNetAU @MEActNet @EmergeAus @MEAdvocatesIre @davidtuller1 @JoanMcparland @Wee_Bawbee @carolbinks @TomKindlon @CoyneoftheRealm @OpenMedF @velogubbed

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Such a key, focused article, beautifully written and saying everything that I'd like to - I don't have the skill, and definitely not the brain power, mine is broken. @SamFleurPearce @MECFS

Kate Singleton @healthlitkate

7 years ago

Such a key, focused article, beautifully written and saying everything that I'd like to - I don't have the skill, and definitely not the brain power, mine is broken. @SamFleurPearce @MECFS

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Interview on BBC Radio 5 Live this afternoon. #SevereME #pwME #Disability

ME Association @MEAssociation

7 years ago

Interview on BBC Radio 5 Live this afternoon. #SevereME #pwME #Disability

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I've just signed an open letter to @richardbranson, telling him to stop dragging our NHS through the courts - will you? speakout.38degrees.org.uk/campaigns/bran…

Deeply impressing letter from M. Hooper, PhD, Emeritus Prof. of Med. Chemistry to MP B. Phillipson, House of Commons, in response of a letter of Lord O'Shaughnessy, Parliamentary Under Secretary of State for Health (Lords) #PACE is nothing but fraud #MECFS margaretwilliams.me/2018/hooper-to…

Cognitive-behavioural therapy for #CFS (#MECFS): neither efficacious nor safe. Br J Psychiatry. 2018 Aug;213(2):500-501. doi: 10.1192/bjp.2018.136. Authors: @FrankTwisk, @LouCorsius. @PACEgate: doi.org/10.1192/bjp.20… Please retweet to increase the impact of the article.

If you think that the @BBCNews should have a rule that Think Tanks can only appear on the BBC after disclosure of their main funders, then please retweet. (If there is enough interest I will set up a petition to the BBC)

Simon Wessely has signed a letter which states “Ensuring that the views and experiences of those who use the services are properly taken account of, should be the sine qua non of a publicly funded body tasked with devising clinical guidelines.” Unless they are ME/CFS patients?

Jeff Smith @JeffSmithetc

7 years ago

Simon Wessely has signed a letter which states “Ensuring that the views and experiences of those who use the services are properly taken account of, should be the sine qua non of a publicly funded body tasked with devising clinical guidelines.” Unless they are ME/CFS patients?

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@guardian There is an #MEdebate at Westminster Hall today Thursday 21st June, 1:30-4:30p.m arranged by @CMonaghanSNP please can you report it? 250k people in the UK have this debilitating disorder costing £3billion+ & devastating lives #pwme #MECFS #MillionsMissing

#MEAction Network UK @MEActNetUK

7 years ago

@guardian There is an #MEdebate at Westminster Hall today Thursday 21st June, 1:30-4:30p.m arranged by @CMonaghanSNP please can you report it? 250k people in the UK have this debilitating disorder costing £3billion+ & devastating lives #pwme #MECFS #MillionsMissing

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Unrest is in the running for this year's Independent Lens Audience Award which honors fans’ favorite film of the season. This film has become a major tool in advocating for #mecfs visibility & health equality. Cast your vote to promote visibility for ME!: to.pbs.org/2sVS8Vy

. @CMonaghanSNP has secured a general debate on myalgic encephalomyelitis treatment and research in Westminster Hall on 21 June. Shame it’s not in the main chamber but I gather that could still happen at a later date. Thanks to Carol @NickyMorgan01 and all who helped.

Backbench Business Committee @CommonsBBCom

7 years ago

. @CMonaghanSNP has secured a general debate on myalgic encephalomyelitis treatment and research in Westminster Hall on 21 June. Shame it’s not in the main chamber but I gather that could still happen at a later date. Thanks to Carol @NickyMorgan01 and all who helped.

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"I got a virus when I was 3. I know I am going to die of this disease and I won't even count as a statistic...right now, I'm just fighting just for my death to be blamed on the right thing"#MyalgicEncephalomyelitis" #millionsmissing

mookychick @mookychick

7 years ago

"I got a virus when I was 3. I know I am going to die of this disease and I won't even count as a statistic...right now, I'm just fighting just for my death to be blamed on the right thing"#MyalgicEncephalomyelitis" #millionsmissing

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This is my arrangement of Blowin' in the Wind with alternative lyrics about the struggles faced by people with ME, performed by patients and carers from around the world. More info in description under song on YouTube. Please share: youtube.com/watch?v=BncUDX… #MillionsMissing

Pls RT if you shed a tear during #hospital. Shameful that #NHS staff forced to work under such stress when patients lives are at stake.

On review of science and data of the #MEcfs #PACEtrial Reanalysis of data the researchers tried to block. If you have concern for evidence based science, this is a story to cover. If advisers suggest otherwise, investigate conflict of interest @janegarvey1 @BBCWomansHour

Ruth Lampard @ruth_lampard

8 years ago

On review of science and data of the #MEcfs #PACEtrial Reanalysis of data the researchers tried to block. If you have concern for evidence based science, this is a story to cover. If advisers suggest otherwise, investigate conflict of interest @janegarvey1 @BBCWomansHour

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*Please share this far and wide* Hugely significant analysis of the much-discredited PACE trial for #MEcfs is published today. 1. Short summary from BBC News: bbc.co.uk/news/health-43… 2. The full fresh research paper: bmcpsychology.biomedcentral.com/articles/10.11…