Author | Lightnews

Mamgu With M.E @mamguwithme.bsky.social · Jun 30

But according to the Simon Wessley et al, it's all in the mind! Tell me how infants & toddlers can think themselves ill, I'm waiting⏳️

Dr Noor Bari @njbbari3.bsky.social · Jun 29

“The study found that 14% of infected infants and toddlers and 15% of infected preschoolers had probable long COVID, similar to rates in teens and school-aged children.”

Apparently toddlers aren’t 🦄. Who knew?

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Mamgu With M.E @mamguwithme.bsky.social · May 12

Struggling to post but want to for #MEAwarenessDay I'm dizzy, cant lift my heavy head, Ive full body pain & weakness but not 'fatigued', which is always used to describe #MyalgicEncephalomyelitis
This is my daily life with #SevereME

#Researchers & #Pharmaceuticals please help

#MEAwarenessMonth

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Mamgu With M.E @mamguwithme.bsky.social · Apr 10

Same here, cant even take paracetamol without a reaction🤦‍♀️ After 9yrs given up trying🫤 Tried starting at a lower dose, cutting up tablets & slow increase, as works for some, but to no avail, still had a reaction. Just know that you're not alone, there are quite a few #pwME & #pwLC who are the same✊️🫶

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Mamgu With M.E @mamguwithme.bsky.social · Apr 8

Get up in the morning & I fight, all day long, fight, then go to bed & the hours that I dont sleep, fight. A mental fight to survive SevereME, some days are harder than others & today's a hard day but I'll get through it, as I have all the other bad days #pwME
#MyalgicEncephalomyelitis #MEcfs #pwLC

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Mamgu With M.E @mamguwithme.bsky.social · Mar 21

Yep, totally agree. Last 9yrs, Ive spent mnths at a time, lyin in bed with my eyes closed, 2 weak to lift my eyelids open but wide awake, my joints slipping out of position every few seconds cos my muscles are too weak to support my bones, yet, fatigue, headache&nausea seem an adequate symptom list

a woman is making a face and saying `` so frustrating '' with her hands .

Alt: a woman is making a face and saying `` so frustrating '' with her hands .

media.tenor.com

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Mamgu With M.E @mamguwithme.bsky.social · Mar 19

many years and I had no issue with that because I was raised to believe that the tax we pay contributes to the welfare of the country and it's people. I detest having to claim benefits to support me, my pride has taken such a knock that I no longer feel good about myself, my pride & confidence
4/13

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Mamgu With M.E @mamguwithme.bsky.social · Mar 19

24 hours. Labour's intended Benefits changes are extremely flawed and are clearly designed to make disabled/sick people's lives exceptionally difficult, we didn't ask for these illnesses & disabilities. I was a high earner, prior to #MyalgicEncephalomyelitis I paid high tax for many,

3/13

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Mamgu With M.E @mamguwithme.bsky.social · Mar 15

After my M.E diagnosis it would always affect me when new #pwME came online, not wanting them to have the hellscape life I have. Then came Covid & #pwLC It broke my heart,so many people, #LongCovid should never have happened.
#pwLC we see you, we hear you, we understand✊️🫶 #LongCovidAwarenessDay

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Mamgu With M.E @mamguwithme.bsky.social · Mar 15

I also question, why the assessor reports exactly the situation, ie 'completely bedbound, cant walk",the DWP then class this as, '0 points, CAN walk over 20mtrs'? Whats the point of us enduring these self worth, knocking assessments, when we're going to end up with a 'no' reply due to the DWP lies

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Mamgu With M.E @mamguwithme.bsky.social · Mar 15

.... to answer with what she had been trained to fit.
If your answer doesn't fit to their questions, they're stumped. So, the thought of these questions ahead, are so depleting of mental strength, energy, confidence, pride and self worth.

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Mamgu With M.E @mamguwithme.bsky.social · Mar 15

In an assessment, the assessor asked, "when you shower do you have support", I replied, "I cant shower, so I dont know, Im completely bedbound", she then kept repeating the same question, on and on, "but if you could shower, would you have support", "what if you could shower?", trying to get me...

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Mamgu With M.E @mamguwithme.bsky.social · Mar 12

Please hear our voices🙏

#MyalgicEncephalomyelitis #mecfs #pwME #pwLC #chronicIllness #ChronicPain #MillionsMissing #NHS @teamlabouruk.bsky.social @libdems.org.uk #FundThePlan #SevereME #MEAwareness #Research

ThereForME @thereforme.bsky.social · Mar 12

We’ve been so moved seeing the #FundThePlan videos over the past few weeks.

Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.

We’d love your help making some noise with it 🙏

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Mamgu With M.E @mamguwithme.bsky.social · Mar 10

They've not just lost the votes from the disabled people, but their family and friends around them, who are witnessing their struggles, bad move Labour!

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Thank you and today has definitely taught me this is the place to be, you've all been so lovely and helpful. Thank you to you and everyone else❤️x

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Thanks😊x

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

It's definitely helped having people who understand😊 It must have been so hard before🫂

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Thanks and great idea, that's given me a more positive look at the Sickaversary, using it as a tool makes me feel so much better, thanks😃❤️

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Thanks😊x

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

I'd forgotten about meditation and breathwork, I used to do this in the beginning, I'll definitely get back to doing that, thanks and thanks for the offer of info but my brain struggles to absorb lengthy written text. You've been really helpful, thanks x

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Hi, thanks for your reply, unfortunately I cant do any exercise, I can only shower once a fortnight & I'm also highly intolerant to medications, so I'm extremely nervous about trying psychedelics but your post might help others who are struggling mentally like me, so thank you very much😊❤️ x

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Thanks in advance of any replies, incase I crash and can't reply x

#MyalgicEncephalomyelitis #MECFS #MillionsMissing #pwME #SevereME

4/4

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

missed out on sooo much life, I had so many plans for this time of my life.
Having not mentally struggled, majorly (the odd down moment) with #MECFS I don't know how to deal with this, so any help or advice would be really appreciated.
3/4

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Any tips on how to deal with this would be gratefully received.
I would like to point out, that I'm so grateful to still be here, after all this time of being severe, but the majority of my 40s and beginning of my 50s were spent either in bed or on the sofa which is next to my bed, I've 2/4

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Mamgu With M.E @mamguwithme.bsky.social · Mar 4

Hi all #pwME I'm struggling mentally, I'll have been bedbound/housebound for 10 years, next Xmas and its really affecting me. Usually, the Sickaversary passes me by with no effect, but 10 years, is such a long time to be missing out on life and no sign of a cure or treatment in the near future. 1/4

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Mamgu With M.E @mamguwithme.bsky.social · Feb 7

My son has developed coeliacs at the same age that I did. It has been a massive fear of mine that the M.E might be passed on also. He gets warned to over-rest whenever he's ill to try and prevent it😨 I'm so grateful for research like this.

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