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Jane Colby FRSA
@JaneCColby
I run . Had severe ME from polio-type virus. Finally back at golf after several yrs unwell all over again! Read my book at methenewplague.net
Englandtymestrust.orgJoined May 2011

Jane Colby FRSA’s Tweets

As always, I would point out that the BBC edited what I said about the names ME and CFS - you can hear the break in the middle of my answer!
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29/ May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. Fixer Ashleigh and Jodie Cleary discuss their experiences of M.E. (3 minutes 38 seconds) Also includes @JaneCColby of the @tymestrust. ITV News Anglia (local UK news programme) fixers.org.uk/news/7611-1120 Day 29 #PwME
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If you're on the Facebook Group for Parents of Children with ME, please feel free to copy this announcement exactly as it is to the Group.
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ME AWARENESS ANNOUNCEMENT This year, once again I'll be sending out a Tymes Trust ME Awareness Card to all children whose parents request one. If you'd like your child with ME to be included, just send a Contact Us form with the child's name and address. tymestrust.org/contactus.htm
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You don't have to have children with ME to join in with #youngheartsday Help us to remember #kidswithME everywhere by lighting your candle on 29th November and tweeting it to me
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TYMES TRUST'S YOUNG HEARTS DAY COMING UP ON 29TH NOVEMBER Now's the time to tweet us any messages and get your candles ready for the day! Anyone can join in - it's the special day when we all remember #kidswithME everywhere. #youngheartsday
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YOUNG HEARTS DAY CANDLES Also you can join in by lighting a candle on the day. Photograph it and post it on your social media. We'll put ours on Twitter and Facebook. 😀
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TYMES TRUST'S YOUNG HEARTS DAY 29TH NOVEMBER ❤ This is the special day each year when we remember all children with ME. If your child would like a Young Hearts card and a little gift, send their details (name, age, address) on our Contact Us form here tymestrust.org/contactus.htm 😀
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To quote Sherlock Holmes to Watson in a back-handed compliment: "Now you have accidentally said something useful!"
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Royal College of Paediatrics and Child Health: “Routine testing of children without symptoms is still interrupting children and teenagers’ school attendance and we do not believe this should continue" telegraph.co.uk/news/2021/09/1
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Thank goodness M&D💕 let us rest/ sleep as needed..glandular fever, painful head/back of neck😖.Doc 🤒😯..mumps & measles no one said open curtains early & carry on sprinting! A scene for sore 👀 it was! Nope.didn't not pass my French but I can now speak it!😉Voila!
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Don't forget our posters - their themes are key issues for #kidswithME and their parents. Find them all at the link shown left of the image. tymestrust.org/tymespublicati #MEawarenesshour
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If anyone would like a free copy of the Voices from the Shadows DVD, in which one of our @tymestrust cases is featured, send your name and address using the Contact Us form at tymestrust.org. Shocking how parents are accused of making their children ill with ME.
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If anyone would like a free copy of the Voices from the Shadows DVD, in which one of our cases is featured, send your name and address using the Contact Us form at tymestrust.org. Shocking how parents are accused of making their children ill with ME.
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Replying to @MECFSisCFSnotME @MEsufferer and 8 others
This is a very good hard hitting documentary, the 30 min version is free to watch voicesfromtheshadowsfilm.co.uk It made my family members (those that watched it) think differently about ME.
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I can't be the only one who glazes over at documents liberally sprinkled with capitalised initials of numerous committees, groups, projects, like so much dusty confetti long after the guests finished trampling over it. Smacks of pomposity: "I'm in the know you know. You're not."
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Please, everyone with M.E., listen to what 's Jane Colby has to say. Running a charity for #ChildrenWithME gives her more credibility than people who...don't. #MECFSisnotME
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I agree with those who think capitulation with the ME/CFS term for clinical use is a retrograde step. Everyone needs support and help, but they need appropriate support and help. Not to make the patient worse is paramount. Do no harm. Quote below is from tymestrust.org/pdfs/mecfsseid
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Wonderfully eloquent and personal account by Rivka Solomon - my long term, long distance friend - who published my true story of how the British Medical Journal reacted to the Dowsett/Colby study of ME in schools - and how I dealt with it! Great advocacy Rivka! #kidswithME
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"Believe a person when they tell you how they're feeling. Don't dismiss them, don't disregard them. Believe them, and have compassion," disabilities advocate Rivka Solomon gives her #BriefButSpectacular take on advocating for people with chronic illness.
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