ME/CFSCoach @simonpimenta
Mind Body & Wellbeing Coach. Recovered from 8 years #me #cfs #fibromalgia and want to share what I learned and help others mecfsexplored.com London Joined June 2009-
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Signed. #MEcfs As promised please find below an open letter everyone can sign asking @sajidjavid to raise #BringMillieHome #SaveCarlasLife Some #NHS hospitals are failing people with #SevereME Are you in that category #RoyalLancasterInfirmary @ChelwestFT ?
Signed. #MEcfs As promised please find below an open letter everyone can sign asking @sajidjavid to raise #BringMillieHome #SaveCarlasLife Some #NHS hospitals are failing people with #SevereME Are you in that category #RoyalLancasterInfirmary @ChelwestFT ?
And what action is taken if hospitals aren't following guidelines @Andrew4Pendle ? Some clearly aren't! #mecfs #SevereME #SaveCarlasLife #BringMillieHome
And what action is taken if hospitals aren't following guidelines @Andrew4Pendle ? Some clearly aren't! #mecfs #SevereME #SaveCarlasLife #BringMillieHome
Sorry to hear that @mikee52000 At times, the #NHS staff do great things. This is not one of those times. What a disgrace #DistrictNurse @NICEComms #SevereME Please retweet.
Sorry to hear that @mikee52000 At times, the #NHS staff do great things. This is not one of those times. What a disgrace #DistrictNurse @NICEComms #SevereME Please retweet.
ANNOUNCEMENT: We're aware and welcome the Westminster Hall debate on #MEcfs that @sajidjavid will be leading. We're also aware that #pwME feel strongly that the current situations with #BringMillieHome #SaveCarlasLife & Karen are represented. So, we're drafting an open…
@TheChronicColab @KSchnickelfritz @sajidjavid I think it’s important to stress that these three situations are the ones we know about because their relatives have informed us. I suspect there are many more similar situations without access to social media and who have either no one or people who don’t know what to do.
Why Part Of Me Made Recovery Difficult: #MECFS If you have #longcovid #MECFS #Fibromyalgia, you may find it useful to consider points made in this video. 👇 youtube.com/live/nbinKeQue… via @YouTube “Exactly what happens to me. Thank you.” “This resonates with me 100%.”
How Dr Stein Helps People With Chronic Conditions: #MECFS, #LongCovid #POTS #Fibromyalgia youtu.be/OwhJlQLW9pw?si… via @YouTube
How Dr Stein Helps People With Chronic Conditions, #MECFS #LongCovid #pots #Fibromyalgia In this interview with Dr Eleanor Stein, you will learn some of the most helpful self-management strategies for ME, CFS, FM, ES and Long COVID youtu.be/OwhJlQLW9pw?si… via @YouTube
The NHS outdated website for #ME and the terrible problems that very severe patients are experiencing in NHS hospitals are intrinsically linked. Where does the average nurse or junior Dr go for information? They haven’t been taught ME in med schools and NICE isn’t 1st stop 🤦♀️
Is this true @ChelwestFT that Carla is extremely ill in West Middlesex Hospital and Doctors are ignoring NICE guidance on severe ME & ignoring her severe POTS? If so, shame on them and Management. Thanks to @TheChronicColab for raising this issue. #SaveCarlasLife #ExposeMENow
Is this true @ChelwestFT that Carla is extremely ill in West Middlesex Hospital and Doctors are ignoring NICE guidance on severe ME & ignoring her severe POTS? If so, shame on them and Management. Thanks to @TheChronicColab for raising this issue. #SaveCarlasLife #ExposeMENow
Isn't it time to listen to the ME Experts who have ALREADY advised you? #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie @ITVGranadaTV @JoshuaStokesITV Tags used in relation to Millie's treatment at #RoyalLancasterInfirmary #MedicalNeglect #MedicalAbuse
Isn't it time to listen to the ME Experts who have ALREADY advised you? #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie @ITVGranadaTV @JoshuaStokesITV Tags used in relation to Millie's treatment at #RoyalLancasterInfirmary #MedicalNeglect #MedicalAbuse
Please take note #RoyalLancasterInfirmary #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie
This is a big day for Millie & her family. In addition to the Twitterstorm at 11am, there will be a protest outside the RLI & her story will be covered by @ITVGranadaTV. Very grateful to @JoshuaStokesITV. Big thanks also to @NickyProctor @juancorlett who made this happen.
This is a big day for Millie & her family. In addition to the Twitterstorm at 11am, there will be a protest outside the RLI & her story will be covered by @ITVGranadaTV. Very grateful to @JoshuaStokesITV. Big thanks also to @NickyProctor @juancorlett who made this happen.
Somatic Tracking For Symptoms & Pain: #MECF #LongCovid youtube.com/live/ZLPEgAxKl… via @YouTube
8 Ways Hiding Your Brilliant Self Can Hinder Recovery* #MECFS #LongCovid youtu.be/uwtwhYh5d1U?si… via @YouTube * This may not be relevant to all people with these conditions, but people tell me that it is relevant to them - and it was to me. Wishing you great health!
Thank you @JulesAHouston
@iEllieFry @MEAssociation @MEActNet Thank you again Ellie for once again reporting on ME in such a thorough and thoughtful way.
@iEllieFry @MEAssociation @MEActNet A very thorough article - thank you.
@iEllieFry @MEAssociation @MEActNet It’s unbelievable that they continue to treat her and her family like this, when it is clearly risking her life (& long term health if she does somehow survive). They have been made aware of similar cases and the devastating outcomes. Something is very wrong with medical system.
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Jessica Taylor-Bearma.. @jayletay
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Joy In The Seasons @JoyInTheSeasons
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Bateman Horne Center @BatemanHorne
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Jo @cfs_jo
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bizw2kd3y75x64 @0n0xdiimp3w
6 Followers 337 Following If you want to make friends, you can contact me anytime TG：https://t.co/Sa6cRvB2x5 WS：https://t.co/FGsxj7eYrG
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@iEllieFry @MEAssociation @MEActNet It’s unbelievable that they continue to treat her and her family like this, when it is clearly risking her life (& long term health if she does somehow survive). They have been made aware of similar cases and the devastating outcomes. Something is very wrong with medical system.
@iEllieFry @MEAssociation @MEActNet Thank you Ellie for your patience & perseverance, another excellent article. 🙏
Millie still needs your help please.
Petition · Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm · Change.org change.org/p/save-millie-…
@fcknsyd It’s hard to find something to be glad about every day but the more you practice the easier it becomes. I used to write 3 things a day, I thought it was daft at first, but it works. Acceptance (not the same as giving in) is key imo. @simonpimenta helped me as well as pwME on here
@EttaLovedayME Millie's lack of ME informed care is an extreme example of how NOT to treat a severe ME patient. Her case will be held up in the future as an example of the level of abuse that is possible, when the medical profession are uninformed. Millie's experience is pwME's worst nightmare.
Update about Millie Petition change.org/p/save-millie-… Fundraiser justgiving.com/crowdfunding/b… #MilliesevereME #SevereME #pwME #saveMillie
Thank you to everyone who has shown love and support to Millie and her family over the last gruelling 8 weeks 💙
Millie has received so many cards over the few weeks, most of these from fellow ME suffers. The amount of people with ME is massive and only growing, it’s extremely disappointing that more research, funding and education isn’t being done to address this. #ME #MilliesevereME #NHS
This is a huge crisis & what's happening to #pwME must be acted on We urgently need the heads of all the #ME orgs to meet with the heads of @NHSuk & demand immediate change for #pwME under NHS care I'm in my 39th year of living with M.E & the situation is worse now than ever
As with the rest of the ME community, Action for M.E. is deeply concerned regarding the recent cases of people in hospital with severe ME receiving inadequate care, and facing disbelief surrounding their condition, from healthcare professionals.
Very difficult for poor Millie, but I truly believe we have started to turn a corner. The nurses are trying so hard and the good education is slowly starting to outweigh a couple of ignorant Doctors. Hang in there everyone, we are still working away quietly in the background 💙
Update about Millie: Petition change.org/p/save-millie-… Fundraiser justgiving.com/crowdfunding/b… #MilliesevereME #SevereME #pwME #saveMillie
Sorry everyone, I've done all that I can today, it's been a tough week. Hope the rest of the day is a great success. Over & out! @LCMEBillboards @TheChronicColab @AaronCa11 @long_covid @AlexSprackland #LongCovidAwarenessDay @LongCovidAdvoc
Pssst. Medical professionals have false sickness beliefs about #MEcfs. The people living with the complex disease don't. #Health #PwME #MedTwitter
Call to action #ChronicIllness community! There are currently several patients in hospital in the UK at risk of severe harm & even death, because there's no NHS Protocol in place to treat them. Whatever illness you have please sign & share widely.#NEISvoid organise.network/actions/petiti…
@simonpimenta Simon, Millie’s family now have your video.
@CaroleBruce17 @EttaLovedayME @simonpimenta Thanks for sharing this Carole, I've passed it on to the family.
@cfs_jo @CaroleBruce17 @MEAssociation @actionforme My bf is currently in med school with hopes of specializing in chronic illnesses, such as MECFS and CIRS, though he'll be almost 50 when he graduates. It seems like the only people who care are those directly impacted--the disabled or their loves one.
Dear Royal Lancaster Infirmary…Millie needs a PEJ tube right now, this moment. Not in a few hours, not tomorrow, not in 5 weeks when she is dead. Right now. #SaveMillie #MECFS #NIH @NIHDirector @NINDSdirector @NIH @nathavindra New post on my blog: whitneydafoe.com/mecfs/?post=do…
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