M.E (not cfs) for 27 years. Mainly here for M.E advocacy,disability rights & Scottish independence.
Scotland
Joined June 2009
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Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
Imagine making light of someone being hit by a train, then rising to become Sercoβs Director of Employability, Assessments and Training, a role overseeing #disability benefit assessment services.
#mentalhealth #suicide
@SercoGroup
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
It's disturbing to think that a world famous athlete can be raising awareness of the mistreatment and neglect of people with #MyalgicEncephalomyelitis on national television while at the same time another severely ill #pwME is being denied lifesaving treatment in an NHS hospital.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
Please sign & share widely. The #HillsboroughBill should have ZERO carve outs. That is what @andyburnham & @Keir_Starmer promised @NowHillsborough
Nobody should be exempt from honesty & decency. The fact we have to make it law tells us everything.
Thanks for the nudge: our call is for MPs and peers to be included under the offence, and the petition is the best way to back it. Please sign at execprosec.org/petition/?refβ¦.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
βTo loose one ME patient may be regarded as a misfortune, to loose two looks like carelessnessβ (insert appropriate alternative words which adequately capture the gravity of the situation). @RoyalDevonNHS are you really doing this *again*?!
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
@RoyalDevonNHS stop killing young women challenge.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
Sadly ironic when an ME org has to issue a statement that they did not in fact agree the thing the government said they agreed.
1/4 π’ A short statement from ThereForME:
We wanted to be very clear, following the health minister @JamesFrith's comments on @GMB this morning that we do not agree that the Final Delivery Plan for ME was co-produced with orgs representing people with ME.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
It's a sickening spectacle to see Labour MPs who think anti-Zionism is racism celebrating the election of Abdul Al-Sayed--an anti-Zionist Muslim who they would've expelled from their party
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
Thank you @BethDobbin for sharing your story on @GMB. Our group is made up of physios &other HCWs whose lives & health have been devastated by covid infections. Like you, they used to love their careers. Now many of them are bedbound or housebound & unable to work.
Six years ago, Beth Dobbin was competing at the highest level of international sport, representing Team GB at the Tokyo Olympics. Now, she is bedbound for up to 22 hours a day after being diagnosed with ME.
Commonly known as chronic fatigue syndrome, the condition has been described by Dobbin as βlife-decimatingβ.
She has written a letter calling on the Prime Minister to meet with her and commit to more funding for research.
Dobbinβs fellow athletes Keely Hodgkinson, Tom Daley and Dina Asher-Smith have also signed the letter. #ME #illness #Olympics
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
@Malcolm_Offord @RussellFindlay1 @MareeToddMSP
@scotgovhealth @Ross_Greer @Gillian_Mackay1 @KayleighFONeill @AdamHarleyLD
This is Beth Dobbin. She represented Team GB at the 2021 Tokyo Olympics in the 200 metres. Later that year, she got a Covid infection & glandular fever which developed into ME.
We need funded research in Scotland urgently.
@JohnSwinney @AConstance23 @jackiebmsp @agcolehamilton
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
Don't forget @elonmusk spent $474 Million dollars on tonight and that just makes it all the more special.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
If we could see some parity with Commonwealth swimmer Archie Goodburn whom Andy promised:
πΉNational clinical lead
πΉImmediate expert review
πΉNational action plan
πΉFaster medicines regulation
πΉImproved access to clinical trials
πΉInternational brain tumour research conference in 2027
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
It would be great to see @andyburnham & @YvetteCooperMP commit to specific calls to action:
1. Make up the Β£15 million shortfall funding for Sequence ME & Long Cvd
(James Frith forgot to say this was missing)
2. Commission NHS care for the severe & very severe
(there is none!)
3. Initiate a parliamentary Select committee inquiry into the failures of ME healthcare with consideration of a statutory public inquiry
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
There really is nothing. You finally get a diagnosis and are then just left to it. I remember being told that living with ME would be easier if I just accepted that this was my life now. Why should I accept it when no real effort is being put into solving it? #MEcfs @andyburnham
βThis health issue has nothing out there for youβ¦ There are specialist clinics, but they donβt have any doctorsβ¦ Itβs life decimating. Iβm in bed 22 hours of the dayβ
Former Olympic sprinter @BethDobbin on her letter calling on PM Andy Burnham for more #MECFS research funding.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
We would also comment on the response by @JamesFrith
The ME Delivery Plan needs to be stopped being pulled out as an excuse as being co-produced by patients & orgs.
There is NO IMPLEMENTATION FUNDING & it falls desperately short of what is needed.
Sequence ME is also neglectfully not fully funded & equivalency with other serious diseases is not there.
We need EFFECTIVE action, not sound bites.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
@JamesFrith your comments this morning on @GMB
need to be corrected, failure to do so perpetuates continued harm being inflicted on #pwME
The Delivery Plan for #ME currently falls very short of meeting the requirements which #ME patients need urgently.
1/4 π’ A short statement from ThereForME:
We wanted to be very clear, following the health minister @JamesFrith's comments on @GMB this morning that we do not agree that the Final Delivery Plan for ME was co-produced with orgs representing people with ME.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
This is so important and I hope that @JamesFrith revises the statement he put out on Good Morning Britain. #ME patients deserve better. Like Beth thousands of us advocate from our beds, completely excluded from life. No ME specialists on the NHS, no training for Drs.
1/4 π’ A short statement from ThereForME:
We wanted to be very clear, following the health minister @JamesFrith's comments on @GMB this morning that we do not agree that the Final Delivery Plan for ME was co-produced with orgs representing people with ME.
Kags β π· #pwME π΄σ §σ ’σ ³σ £σ ΄σ Ώ retweeted
I π―π― agree @adamhillscomedy #TheLastLeg that @BethDobbin is, for very many once fit and healthy (but now severely disabled) people, the true TV Sports Personality of the Year and ππ₯π
I love @lammas_leaves idea below π
@channel4
@channel4sport
#pwME #pwLC
#MillionsMissing