Peter W 🇺🇦

Europhile 🏳️‍🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.

[Peter W 🇺🇦 @mediumwhite]

@Matt56404055206 The impression I got is that the parents are struggling to keep their head above water and want to care for their child. While I like the idea of pushing back against LAs in this scenario, they might have other priorities at the moment.

[Peter W 🇺🇦 @mediumwhite]

I have just read this legal judgement about the treatment of a child with very severe ME.

It is harrowing and exemplifies the insufficiency of current knowledge and medical provision. Thankfully the outcome appears positive.

https://t.co/h3GPtQhDdF

[Peter W 🇺🇦 @mediumwhite]

I would add that it exemplifies the need for a core group of ME experts who can support hospitals, local authorities and the legal system.

[Peter W 🇺🇦 @mediumwhite]

The @MEAssociation needs to be supporting pioneering research, not undermining it.

Organisations need a steady stream of new blood to challenge old dogma and bring in new ideas.

The @MEAssociation appears to me to be a classic example of tired leadership. It needs change.

[Peter W 🇺🇦 @mediumwhite]

The @MEAssociation's apparent refusal to renew trustees blocks new ideas which people with ME desperately need.

The impact of this was made clear by Neil Riley (former MEA chair) who disagreed with govt funding for one of the most promising lines of ME research.
(source: Times)

[Elisabeth Klaar @lammas_leaves]

Please see an update on our website re the AGM of the @MEAssociation and @NickyProctor's and my motion to require the MEA to update trustee tenure rules.

https://t.co/i0vQqZT5im

(includes original motion text and background info/explanation)

#MECFS #pwME #MyalgicE

🧵

[Peter W 🇺🇦 @mediumwhite]

That comment on the Times article announcing the SequenceME funding showed us the views of the chair of the ME Association trustee. It is unlikely to be a minority view.

Thankfully Riley resigned under significant pressure, but the renewal needs to be completed.

[Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @Klang764]

It appears MEA will do anything they can to avoid scrutiny see 🧵 #pwME

[Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @Klang764]

How ironic that it is #TrusteesWeek @MEAssociation YET AGAIN deploying delaying tactics rather than addressing the substantive problems with their organisation 😡#pwME

[Peter W 🇺🇦 @mediumwhite]

@MEAssociation @mecfsbiobank Hi @MEAssociation, why have you still not resolved with your members to implement the 9 year good practice time limit on trustee tenures?

The organisation needs new blood. It's long past time for change.

[Peter W 🇺🇦 @mediumwhite]

The @MEAssociation had long disregarded UK governance standards, resulting, in my view, in mismanagement and poor financial and strategic decisions.

The MEA should be a vital organisation for change but lacks vision, dynamism or impact.

It must change.

[Elisabeth Klaar @lammas_leaves]

Please see an update on our website re the AGM of the @MEAssociation and @NickyProctor's and my motion to require the MEA to update trustee tenure rules.

https://t.co/i0vQqZT5im

(includes original motion text and background info/explanation)

#MECFS #pwME #MyalgicE

🧵

[Peter W 🇺🇦 @mediumwhite]

Every time people discuss the problem of cultural appropriation, I think of all those “Italian” restaurants which never saw an Italian person, not bare much in common with Italian food.
Looking at you Jamie Oliver.

[LBC @LBC]

'Insult to my culture': Italian chef loses legal challenge after he was sacked for refusing to put pineapple on pizza https://t.co/wfwlSJul0M

[Peter W 🇺🇦 @mediumwhite]

@SabineG04696236 Absolutely.

But even if we can’t move people from 0 to 100% understanding , moving them from 0 to 50% can be helpful.

External organisations can achieve that more easily than the person with the disease, as they are independent.

[Peter W 🇺🇦 @mediumwhite]

Addressing this should be low-hanging fruit.

In supporting people who are learning to cope with an ME/CFS diagnosis, we also need to help friends and families understand the disease, and how to support their loved ones who are living with it.

[Lethe @Mormolykeia]

I'm struggling so hard to get my husband and daughter to understand and respect my need for rest. How do you set firm boundaries?

#mecfs

[Peter W 🇺🇦 @mediumwhite]

@Seejaybee2 @anon_opin The reason for this is that the busses are insufficiently subsidised and supported. This can be changed.

[Peter W 🇺🇦 @mediumwhite]

@KSchnickelfritz 100% agree.

This disease impacts full families and communities. Assisting with this is not only important for the person with ME, but also enables us to engage family and friends of people with ME who are vital for campaigning, fundraising and donating.

[Peter W 🇺🇦 @mediumwhite]

And by "we", I mean the ME charity and medical community.

There are additional benefits to doing so - friends and families of people with ME are more likely to be able to donate and fundraise for change. These are key relationships we need to build.

[Brian Fog @useless_priest]

I’m in awe of Beth Dobbins tbh. Putting herself on the line AGAIN in a few days. Nobody should have to do this!

[ThereForME @ThereForME_UK]

Thank you to @BethDobbin for making the case for action so clearly 💙

People with ME need fairly funded research and the hope that treatments will be developed. We hope the PM is listening.