Cambridge ME group

CBME is a support group based in #Cambridge UK for people with #MECFS, #MyalgicE , #CFS, #PostViralFatigue, #Fibromyalgia, including #pwME caused by #LongCovid

[Cambridge ME group @CBMEgroup]

George Monbiot laying out for all to see the horrific history of deliberate #MECFS denial by the Science Media Centre

[George Monbiot @GeorgeMonbiot]

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. https://t.co/qVjkbiGQY3

[Elisabeth Klaar @lammas_leaves]

And for further info - here's the ME Association statement that they posted online and on social media accounts yesterday morning.

https://t.co/iazMTL13Xj

[Elisabeth Klaar @lammas_leaves]

Further information and background can be found at this website:
https://t.co/i0vQqZT5im

[Elisabeth Klaar @lammas_leaves]

our call for change. We look forward to seeing as many of you as possible at the online AGM.

We are grateful for your input and understand how much energy this will have taken.

Elisabeth Klaar & Nicky Proctor

[Elisabeth Klaar @lammas_leaves]

of the MEA has required a lot of energy. We have asked advice from the MEA and been guided by their responses on matters regarding deadlines and the format of our motion.

We appreciate the support of the ME community who have responded on social media, via email, and by phone to

[Elisabeth Klaar @lammas_leaves]

we hope the MEA makes collaborating more straightforward in future. The ME Association still has to demonstrate to us that it can make reasonable adjustments in its communications with the community it serves.

Drafting this motion and engaging in discussion with representatives

[Elisabeth Klaar @lammas_leaves]

for the 2024 AGM.

We have been in communication with Mr Riley and other trustees since submitting our motion.

There have been times when emails to us have not been clear or straightforward. The next phase will necessitate the involvement of larger numbers of people with ME and

[Elisabeth Klaar @lammas_leaves]

ME Association @MEAssociation AGM
#pwME #MECFS

@NickyProctor and I are sharing a public statement about the ME Association AGM.

https://t.co/ka9xCROuOg

Nicky and I are pleased to see the ME Association has issued this public statement in response to our proposed motion 🧵

[Peter W 🇺🇦 @mediumwhite]

The best thing we can do to drive change for people with ME and LongCovid is to findraise for change.

Having spent time to understand the organisations, I am donating to @actionforme and @MEResearchUK.

If you or your family can support, please do.

https://t.co/X6knzVkgdG

[ME Research UK @MEResearchUK]

Jonathan Davies, chair of ME Research UK, shares about the Big Give Christmas Challenge.

Donate here - https://t.co/OLoYOMDA4v

Read more about the Big Give - https://t.co/LhgnMECVCp

#BigGive #Christmaschallenge #MECFS #myalgicencephalomyelitis #MEresearch

[#ThereForME @ThereForME_UK]

It’s Rory Stewart! @RoryStewartUK is one half of @RestIsPolitics podcast, which covered Long Covid earlier this year.

His message: “My Christmas wish for people with Long Covid is that you are able to feel welcome, accepted and cherished over the holiday season.”

#ThereForME

[Katy B @KatyBruce108]

Grateful to @RoryStewartUK for his Christmas message to #pwME & #LongCovid & to @ThereForME_UK for organising this.
Reading messages throughout December from such a diverse range of allies means so much to a patient group who continue to be so misunderstood & mistreated.

[Jess Sylvie @scotjess3]

I second that. @drclairetaylor is a gift to us who have #MEcfs, #LongCovid & comorbidities (which she knows how to dx & tries to treat).
She deserves to win this award.
We need many more like her.
Thank you Dr T.

[Adam @ABrokenBattery]

Just seen the hygienist for the first time over 5 years. Being bedbound with Severe ME meant there were no options until recently which is ridiculous. I highly recommend @sparklefairyltd Jo covers Derbyshire, Nottinghamshire, Leicestershire, Staffordshire, South Yorkshire…

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

To everyone with ME who read the editorial by the Chairman of the MEA.

As I’m elevating my complaint to the Charity Commission @ChtyCommission it would be very helpful to me if you could briefly state in the comments how it made you feel. What was it about the article that upset you?
Did any of you not get upset?
How did you feel about his reply statement?

Was his statement of apology only on here or did you read it somewhere else and if so, where?

With limited energy like us all, this would greatly help me.

Please share and tag people who may not have seen this.

Thank you 💙

@SteveFifield3 @alexis___me @MEFoggyDog @JanetDafoe @DafoWhitney @jayletay

Statement of reply to his editorial:-

https://t.co/Hf2gbOMPDz

[Peter W 🇺🇦 @mediumwhite]

Charities are the biggest funders of medical research in the UK - we can't achieve change without funds.

Please do give if you can, and share with friends and family

[Peter W 🇺🇦 @mediumwhite]

Really glad to see LongCovid and ME being talked about together by @LaylaMoran and @GwynneMP

[Elisabeth Klaar @lammas_leaves]

here it is: https://t.co/iazMTL13Xj

[Elisabeth Klaar @lammas_leaves]

The ME Association have made a public statement, now on their website, in response to our motion below. Link to their statement in next tweet.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

1/
📣 ME Association update on my complaint

As some of you know I made an official complaint in relation to the chairman’s editorial in the ME Essential magazine.

I personally felt the article was so inflammatory, so misleading especially for those newly diagnosed, and as it even made me second guess my own capabilities as a severe ME patient, I decided to write to the Trustees.

Sadly, I never received any communication from the Trustees directly nor did they answer any of my questions or remarks about the editorial.

In my letter sent via email on 19/11/24 I wrote;

“I was very disturbed to read that Mr. Neil Riley had used the platform as Chairman of the ME Association to write and publish his opinions on people with ME to ‘move more’.”

“He explained how people would be offended at his statements. Then my question is, why make them?”

“He states,
“There are some with ME who are extremely ill, confined to bed and for which my ‘remedy’ would be totally wrong.”

I am unclear here; has Mr. Riley become the new medical advisor to the ME Association or has he confused his duties?”

“I propose that a resignation be offered. I do unfortunately feel that his tenure as Chairman is now at an end.”

“As we look towards the health and socioeconomic impact of LCME, we need someone who will use science via research to lead the community and this charity towards better treatment and healthcare and save their personal opinions for family and friends.”

I received three emails back.

The first was on Monday 25th November, over 4 weeks later from the Editor/Designer thanking me for my “very detailed email” and that it would be forwarded to the Trustees.

The second was on Wednesday from the same person who was asked to relay this;

“the Chairman has issued a statement and at this time there are no more statements planned to be issued from the Chairman or Board Of Trustees”.

So, it is clearly obvious that the Trustees have no intention of either responding specifically to the points I had raised in my letter about the chairman’s suitability to continue his role.

This was a very dismissive, up yours response impo.

I actually felt sorry for the messenger of this message as I got the feeling she felt bad that this was their only response.

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

@JanetDafoe @DafoeWhitney @MEAssociation Absolutely Janet. It goes against everything the MEA stands for and basically supports GET. It’s a very unwise editorial which is why I made an official complaint to the MEA which was ignored. I was twice just pointed to his statement of ‘apology’ which didn’t really help anyone.