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Diana Newton-Smith Dec 9
RT on behalf of my daughter (100% bedbound, repositioned by carers, ). She has been dismissed, belittled, insulted, judged, yelled at, & turned away by doctors. A very small number of doctors and nurses have shown compassion & kindness).
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Kamisolf 🇧🇪 39m
Replying to @kamisolf
I have also POTS , OH , oh boy, help. He feels on my wrist for my heart beat. He says my heart is totally ok. My doctor GRRRRRRrrrrrrrr
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Caroline Day Dec 13
Female : My periods are becoming totally unbearable. Although the doctors and specialists are baffled, I'm sure this illness is to blame. Has anyone else suffered a significant worsening of their menstrual cycle since having ME?
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Kirstie Blaik Dec 13
I've previously refused CBT and GET. GP suggested clinical psychology. Are these not two and the same? I'm hopeless, not because of mental illness but due to incipid mecfs. I reject treatment from the horrendous PACE trial. Thoughts?
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Alice Lewis 14h
40 years is a A lifetime stolen ! TPTP are responsible For this OUTrage. TkU for yr ONgoing advocacy, Carrie ❣️
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margedillon 23h
Has anyone been prescribed Naproxen for joint pain related to and did it help?
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batteredoldbook 1h
Proud of some of the videos I've made recently for . But the more I make, the worse it will be for me when another M.E patient advocate comes along & threatens me with the account's deletion. The only way I could keep my photographs safe was to protect my personal account.
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Kevin Reinholz Dec 13
Good morning Twitter! I’m up bright (dark) & early on the US West Coast! I woke to a migraine yesterday, & have this weird thing where the day after a migraine I get an unexpected boost of energy (by standards anyway). Apparently that includes waking up early! What’s new?
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batteredoldbook 38m
Bullying within the M.E community.
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Alexandra Watt 19h
Does anyone have any experience with Pregabailin otherwise known as Lyrica? The doctor I saw today prescribed it to me, I researched it and I don't think I'm going to take it. Any personal stories?
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JE Barnard 13h
On the blog this week: Jenny, a Golden Retriever rescued from Istanbul by a Canadian family, brings cheer to shut-ins in S.Ontario. and where you can donate to continue the good works.
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MoleyME Dec 5
See Christmas Survival Guide leaflet handed out by the NHS MECFS clinic this week states ... “Although there is no disease there are problems “ .. even they don’t believe our illness 😔 merry Christmas ME/CFS clinic !
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Jerrold Spinhirne Dec 8
Only the ICC select research subjects with ME. Research using other criteria has no clear application to . The NIH has done ZERO research on ME—only on the ill-defined fatigue condition CFS, now redefined as SEID (ME/CFS), which is not ME. CFS research now applies to no one.
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SarahPema 9h
Replying to @SarahPema
Current opera. Too ill/exhausted to eat. To eat, need to prep food. Too ill/exhausted to prep food. Not eating much. Bad for blood sugar, pain, weakness, energy. When in the red, expenditure deepens debt. No guarantees of income. Feeling vulnerable. Alone. Scared.
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Action for M.E. 3h
Aged 13 - 23 and living with in ? What should your school and teachers know? Complete this survey for the chance to win a £40 voucher!
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Jenny Tips for ME 🥄 6h
A couple of years ago we bought a Christmas stamp with our names on (probably a vistaprint offer or similar) I’m not sure how recipients perceive it, but it saves me energy and then I use that energy to write a personal note to people I don’t see often.
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mandy Dec 10
Quote of the day yesterday from a well meaning friend. Your looking really well, maybe you just needed the rest!!!!! What for the last 7 years🤬🤬🤬
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Diana Newton-Smith 3h
I hope I may ask on behalf of my daughter (23 yrs sick, very severe ME, 100% bedridden, repositioned by carers): What are your dosages for and ? Had you unsuccessfully tried other medications before? Thank you.
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HealingCFSME Dec 13
Experience of isolation and kindness when living with illness
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Petra. 10h
Today I got a message from local care interests employee. Asking what they could do for me cause they read my Twitter messages. Followed ME developments in the NL because of my telling. Have explained my intentions. What would you say to them? ?
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