Jo
@cfs_jo
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CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Proud “Anti-Recovery Activist”
Yorkshire and The Humber, England
Joined January 2019
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Our hospital has just reintroduced mandatory mask wearing for all visitors. It’s real again.
#CovidIsNotOver
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@FaithOxenbridge
My Dr told me to rest. As I had a busy life, I did what I thought was resting. But now I know what proper resting looks like and I wasn’t doing that. It needs spelling out but it also needs a system set up to help you rest - childcare, cleaning, money, help with admin etc.
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So, Mum is recovering from sepsis well, but is now covid positive. Hospital opened for visitors for 3 days last week and it ripped through the wards. Thanks Government
#CovidIsntOver
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@LilahSturges
@ekverstania
There was some classical music on the radio in the background and my then 3 yo stopped, listened and said “I used to play the violin”
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1/3 I’m in shock. Consultant Surgeon wore a mask and said he has done since day 1! He didn’t question my ME and even empathised with me about it! Said if I wasn’t well enough on the day they would reschedule, no bother. It’s a large lipoma removal via local anaesthetic and …1/3
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Oh my god! This is how the public are manipulated. Makes my piss boil.
‘Whatever you do, picture editing team… don’t involve dear William!’ 👀
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@louisapoet
Regardless of who can make 10 portions of home made soup for thrupence, that’s beside the point. The point is a tin of knacking soup should not cost £1.70!
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My beautiful Mum sadly passed away last night. She left this world as she had lived in it, quietly and without a fuss. I will be forever grateful I had been well enough to see her more over the past few weeks. I will miss her every day. 💔
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My big fear… There will be a universally accepted test for ME. They will test me using this new criteria and find that my results still come back “normal”. 😱
#Malingerer
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Dear
@guardian
Why do you hate people with ME so much?
Why do you print one fairly accurate article based on fact and sound research then get dazzled by the biopsychosocial grifters? Do you know the damage you are doing? It’s cruel.
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I see the Uk media are rolling out “news” that Long Covid is not really a thing 🙄
Why would hundreds of thousands of people in the UK suddenly decide they no longer want to go to work, socialise, engage with their families and prefer to stay at home alone?
#LongCovidAwarenesDay
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I’ll happily look for work. However, the job would need to be on an “as and when” basis. Maybe 5 hours maximum a fortnight. From home/sofa. Must not include phone calls, reading, talking or learning new things. And it’ll have to pay me as if I’m full time. Ok? I’m ready.
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GPs must surely feel this is the final straw? Their status and standing has been eroded over the past decade, I don’t know how they keep going.
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Can anyone recall seeing CBT promoted so heavily for erectile dysfunction? Or any male specific condition?
There is nothing that CBT can’t cure! It’s a miracle!
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@hannahfearn
Do you put your heating on when cold - or have a wood burner?
I have air con only because of my medical condition, but don’t drive and I haven’t flown since 1988. Which one of us is causing most problems 🤔
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#ThisMorning
Please give a shout out to all those chronically ill people who are bedbound and are finding this heat extremely challenging and distressing.
#pwME
#MyalgicEncephalomyelitis
#MEcfs
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Can’t reply to him, but I will say once again for those at the back, I was pretty suddenly bedbound. Like many others, I went from being very active with strong leg muscles from dancing to unable to walk within weeks. THAT is not deconditioning.
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I feel this should be in capital letters or shouted through a megaphone. The nurse from my GP practice has just rung to see if I’d prefer a home visit for my smear and coil removal!! I didn’t even request it. I’m in tears here.
#pwME
#MedTwitter
#WomensHealth
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@birdwoman1966
Once a caller said to me Q for cucumber and now that’s all I can think of for Q 😂
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3/3. It was such a positive consultation. Wish it was the norm for us all every time.
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Out of hours Dr: Other than ME and POTS is your health generally good?
Me:
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@TinyWriterLaura
The slogan is awful. But highlighting the word “yes” in the same colour is just unforgivable.
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@theslowlane_ME
I’m sick of hearing “death or recovery” being the only two outcomes mentioned.
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Saw new GP. He was lovely. HOWEVER…I mentioned my ME and he looked puzzled and asked me what ME stood for. Sigh. But then was interested and listened and asked good questions about how I manage etc. So I’m going to give him a chance and I told him I’d be back with a list!
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@mermhart
@emmamovie
For those of us who have been housebound for months, years, decades even, this
#COVID19
is giving us all sorts of benefits we’ve never been afforded before. Please don’t forget us when the virus has gone 🙏
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I’m saying this again.
Even if I got no benefits, I still couldn’t work. I will just die. Slowly, granted, but I will die.
#ME
#ToriesOut
#NotFitForWork
#Sunak
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Caught up with
#ThisMorning
I’m loving ME being called ME all over the place. Dr gave a good overview in the short space of time allocated. Dermot asking her to come back to talk more in depth 👍
Hope this momentum continues.
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The thing with ME/cfs is that you can believe one day you’re on the up and the next you think you’re dying. Sometimes these events occur in one day. Or even in one hour.
#MEAwarenessHour
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Woke up feeling fairly symptom free today 🥳 so undertook some tidying and got rid of stuff. Not overdone it. But just goes to show that as soon as
#pwME
feel a bit better they do things. Contrary to psychs’ thinking we’re not afraid to stand/walk/work.
#NotDepression
#MEcfs
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@TinyWriterLaura
It’s less about what the children need and more about getting parents into full time work - make no mistake about their hidden agenda.
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@LauraPAuthor
This is me! I can get that she wants/needs privacy. I don’t get that she hasn’t (or her aides haven’t) issued a “thank you for your kind letters/cards/gifts” message. Not one mention in the media. It proves that the press can be silenced by the RF machine.
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2/3 he even offered anaesthetic with no ephedrine when I said I get a reaction to it.
Also offered gallbladder removal (polyps) and understood my reasons when I refused. I said I didn’t want it to exacerbate my ME but would consider it if it becomes problematic. 2/3
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One rose has bloomed on my friendship tree which was planted in memory of my late, lifelong friend Liz. Isn’t it pretty?
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@emmma_camp_
Ah, I see! Your opening comment is clearer now. You are judging others by your behaviour/standards.
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Imagine! A powdered drink three times a day. Soon. Dare we hope?
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1/2 After 3 years and quite a battle I got to the top of the waiting list for the nearest CFS clinic (yes it’s called that). They’ve just rung to offer me an appointment. In person only assessments. How useless is that? I didn’t expect anything to help me because it’s …
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I can remember the exact date I decided to be disabled 🙃 In fact I was so determined that I decided to also lose my job, friends, hobbies and socialising. It’s such a blast here at home every day eking out my benefits.
@RachelCDailey
You can also tell those who decide to be disabled that they either need urgent mental illness treatment or to start taking adult life seriously instead of pretending tiredness on the days of assessments only is not a disability or diagnosis apart from me me me me look how ill me
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A hierarchy in illness performance now. 🙄
Believe me, if she’d had ME, her status, grit, stoicism, whatever, would have made not a jot of difference.
I’m pleased she was well enough to perform yesterday but it doesn’t make others who couldn’t “lesser”.
✍️ 'When lesser mortals would have stayed at home, Catherine proved that the show goes on' | Writes
@AllisonPearson
Read the comment in full here ⬇️
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I see that NICE have said GET is not appropriate for
#LongCovid
patients. Whilst I’m delighted for those patients, it just shows that they CAN make amendments when they want to. I’m fuming. Let’s hope it means they are changing their minds for
#mecfs
too. Soon.
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This is why you should never comment on or retweet these blue tick arseholes no matter how tempting it is. Every click/comment good or bad, earns them dollars.
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@NataliaNight2
@MattWalshBlog
Feminists are out there fighting this but are being blocked, no-platforned and sacked from their jobs for speaking up.
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Had a shower. I was thinking (yep) about how, before I got ill, I never used to tell anyone I’d had a shower let alone post it on social media 😂 Just got on with it. Same with going out the house, just did it. It’s absolutely bananas the way life has turned out. 🤪
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I’m scared to go hospital for anything because it seems ME is not understood nor catered for. I fear I would get worse or sectioned.
#DontLetMEDie
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Didn’t think to ask why patient felt the need to pay for tests? Maybe patient wasn’t feeling listened to?
Worst of all, in her position, she feels the need to patient shame on a public platform.
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It’s been an emotional few hours. My son picked me up and took me to his house. I haven’t been able to visit for nearly 5 years. We had bacon butties and a cuppa and a lovely couple of hours chatting 🥰
#Loved
#Family
#Improving
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There wouldn’t be a need for a campaign to
#TreatLongCovid
if
#TreatMECFS
had been taken seriously.
#MEAwarenessHour
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Instead of preaching to the converted on here, I’m lucky to be raising awareness in person today. Off to meet my old dance class for coffee this morning and I’m taking a fact sheet for each of them. I will ask them to share it with at least one other person.
#WorldMEDay
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@MurielBlaivePhD
Doubling down…not such a good look.
Some people wore masks before covid you know…cos of allergies or just not wanting to catch a bug.
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2/2 15 minutes later I’m laid on the sofa still scrolling and realise all I’m wearing is one compression sock and my knickers 😬. I’m glad today wasn’t the day I departed this Earth 😂
Sorry for the mental image 😬
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Nine years ago today we tied the knot 🥂in a small intimate ceremony on a sunny autumnal day.
“In sickness and in health” has been well tested since 😬
❤️
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And can I just say, once again for those at the back…If you are severe/very severe ME you cannot participate in CBT or indeed any talking therapy. I’m out my worst and into a shit moderate but even so I couldn’t cope with counselling due to the intensity and concentration needed
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When my body can’t seem to do anything well, how come my chin hairs still stubbornly thrive? Why don’t they get ME and wither away?
#Reality
#OldLadyBeard
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I apologise heartily for the source, but the story is gobsmacking! 20 years in psychiatric hospital when she actually had Lupus. Parallels with
#ME
being treated as a psych problem.
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1/2
I often think about dying suddenly - how I’ll be found and by who (living on your own sharpens this image). This is why I wear nightie and knickers in bed. This morning my phone pinged and I got distracted while getting dressed after a shower…1/2
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ME patient waiting for a specialist.
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I love this announcement. Bhupesh gives us hope.
Does it give anyone else the collywobbles in case their gold standard test comes back negative? 😬😱
#UnnecessaryFear
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I’m cured! It’s official. Well, I’ve been out the house twice in 2 days so that’s my interpretation 😆 Actually walked down one aisle in what we call “little” Asda. Not done that in a shop since Jan 2019. I chose my own bananas and some hot cross buns. 😊
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#WomansHour
As a chronically ill housebound person who lives alone, Twitter and the internet are my lifeline.
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@ITV
@Suej1959
The scandal of the PACE trial, where Myalgic Encephalomyelitis was reduced to something to be cured by talking and exercise.
The scandal of the SMC having a seeming monopoly on what “news” and research can be published. Millions left to rot in bed with no medical/social care.
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How many more young women need to die for NHS hospitals to stop abusing
#SevereME
patients and follow the
#NICEGuidelines
? One day the medical community will look back at these tragedies with deep regret
#BringMillieHome
#DontLetMEDie
@gmcuk
@rcphysicians
@rcpsych
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Received my PIP assessor’s report (review). It’s a world away from the one I had in 2019. No cutting and pasting, no “standard” comments, it was almost word for word what I said and reflects my world. I’m happy with it. Let’s see what the decision maker decides. 🤞
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🧵 ME and accommodations in hospital. (Small - to them - procedure under local. Day case - everyone turns up at 7.30 and waits their turn)
1. I told Consultant at initial consult about ME and didn’t need to explain why I would prefer an early slot. He understood & agreed ✔️
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@rabbitinahat
@kirstymhall
Do you know what the best bit for me is? They didn’t use young pert small breasts. There’s a world of difference examinining size A/B cups and D+
Most of those illustrative drawings show small breasts.
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I feel for her. But she’s had more tests done in a year than I’ve ever had/been offered. It’s not a surprise or a new illness, it is POST VIRAL and if it hadn’t been a pandemic she’d have the
#cfs
label. I get quite irritated even though these voices help.
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The new covid variant apparently manifests itself with symptoms of fatigue, muscle ache and fast heart rate. How on earth will
#pwME
know if we’ve got it?! 😆
#EverydayLife
#Omnicron
#MECFS
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Also, she said (very nicely, she was lovely) “so I’ll put you down as declining the service” So I said “I’m not declining, I can’t access your service”. She said she’d speak to the clinicians and “maybe” one would ring me to discuss why I need to attend. Utterly pointless.
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ME made me flatten my emotions. Tried to not feel anything, happy or sad, because of the toll it takes and I worried I’d never be able to feel real joy or excitement again.
Well, this year I genuinely feel a flutter of excitement for Xmas and I’m loving it. Hope it lasts 😊
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I’ve updated this. There’s a gap where it used to say “missing from caring for Mum”. Mum died and I couldn’t help her in her last years or even mourn her in the way I’d have liked. ME steals so much from us.
#MEMillionsMissing
#MEAwarenessDay2023
#WorldMEDay2023
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6/6
So whilst it was not a major reason for an operation, it just shows that no matter how well you advocate and speak out, the accommodations are just not there for us.
If I have to go again, I will be asking for written proof that they’re making accommodations.
End.
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Five years ago today, I signed myself off sick for a week. Never went back. Three years ago this week my employment was terminated.
It feels simultaneously like a lifetime ago and yet only like yesterday.
#ME
#StillHere
#Improving
#Optimistic
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Proof I was out in the wild last night disguised as a normal human being! 😊
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This shows that lower temperatures for
#pwME
mean bodies are working harder to keep warm. Therefore it might generate PEM without us realising? Hmm.
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I’m genuinely pleased if she has recovered. But she said exactly the same about her first trial of antiviral (paxlovid?) only to find herself crashed back to below baseline. With such a large following and influence, I’d have hoped she’d be more cautious.
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GPs Behind Closed Doors. Young ASD woman presenting with 6 months of severe exhaustion (she said she hasn’t the energy to get off the sofa), brain fog, difficulty concentrating. She cried. Bloods clear. Not one screening question for PEM. ASD related low mood apparently 🙄
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Told my cleaner/helper/friend that I’m going for a Tilt Table Test. We discussed the perils of unfettered breasts. She drew me this 🤣🤣🤣
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Mum’s poorly and on her way to hospital again. Not only does
#ME
make you feel useless because you can’t go to sit with her, but the emotions are so draining and debilitating. ME really does take away more than you can imagine
#MEAwarenessHour
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I’m crying at just the intro from
@krishgm
on Channel 4 News. I feel seen and heard.
#ME
@JaneDodgeC4
Thank you for your report
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@CaroleBruce17
What happens when all the true ME Specialists are too old to do this? Dr Weir is already all but retired. Where are the younger up and coming specialists?
@MEAssociation
@actionforme
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