News from Doctors with ME

At the end of the day, it seems all about tone and trying (too hard) to create an 'impression', one of superior knowledge, expertise & legitimacy, I suggest?
'We are medical/ /legal professionals who know this better than lay people......'..... I think not!

I suggest 2 of the 'directors' should examine what they are trying to achieve and rethink their approach.
Let the dust settle and restart with a whole director consensus approach after internal private debate.


I also suggest they examine what is necessary.
So what about the buzz word and steer of Co production - vital now in NHS Service/ Healthwatch delivery- valid carer and valid patient experience & the lived experience?

DwME have arrived rather late to the party (NICE in particular)...
I had a lot of uneasy about the deliberations postings and approach to NICE before DwME was formally set up ........

I did not respond to the appeal to join their 'pre DwME' party, appeals and 'initiatives' because I had been enshrined in the NICE debate since 2007- and well before (as many here have)- and I knew it inside out and back to front.
I knew it like many on S4ME blow by blow from the JR and before.

Some of their training material etc is useful and helpful.
I suggest that is what DwME should focus on that rather than trying to promote themselves outside of the patient experience.

The 'tone' of other communication we have been discussing is a definite turn off for me!
 
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Doctors with ME have posted two long Twitter threads.

The first, if I understand it correctly, says changes to ME services resulting from Sajid Javid's groups and the NICE guideline should be mandatory.
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The second is critical of some criticism of some of DwME's output, specifically on the S4ME forum. The general message I got from a quick read was that while Richard Ramyar thinks S4ME is valuable, he objects to our members being allowed to criticise some of DwME's materials, and claims this has caused harm.
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Edit to add my personal response: Richard, you are a member here, and are welcome to engage with our discussions of DwME's work and put your perspective. I hope you will, and will also encourage members of DwME to join S4ME and put their points of view.

I think it's worth reminding DwME members and anyone else reading forum threads, that forum threads are conversations where all members are free to express opinions on anything relevant to people with ME/CFS, provided they do so within the rules. We cannot and do not police opinions, any more than Twitter does, and any opinion expressed here is the opinion of an individual, not a 'forum view', and should not be read as such.
 
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I find it hard to get much actionable and really understood out of these very long tweet chains. What position has caused what harm? As far as I can see the bulk of the complaint here is they aren't communicating very clearly or well, they are using terms weirdly. What are their ideas? I am just left feeling mildly attacked and I don't understand for what or why. I did't find these twitter threads constructive. Looking back through this thread the criticism seems to be they are communicating very poorly which I agree with and is my main criticism about what they have said, there was little of constructive feedback nor constructive ideas to progress the situation with pwME in the country.
 
He explains his highly idiosyncratic writing style at DwME as a necessary part of communicating with professionals. Yet these Twitter threads, meant to communicate with us non-professionals, are full of the exact same kind of unintuitive jargon and awkward writing.

These Twitter threads (both in their content and in their length—80 tweets!) make it clear Richard’s feeling deeply victimized and that he doesn’t see any merit in the criticism that’s come his way. I wish the best for DwME going forward but my expectations are very low if this is how their leadership handles critical feedback.
 
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"22/ Big boys and girls are used to the cut + thrust of academic, professional or business discourse. But it cuts both ways. More ownership + policing of culture is necessary. Balancing the needs of the forum, a dominant personality + ad hoc raiding parties must be difficult."
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Big boys and girls don't feel the need to write in this style.

Edited to add: And why are the "Honorary Fellows" prepared to turn a blind eye? And the other Directors?
 
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Anyone else reacting to the use of the term "gentlemanly"?

For a Scandi like me, it seems rather patriarchal, aristocratic and colonial, but I do not know how other people outside UK interpret it.

Other than that, I felt Richard made some good points. Cfs_research is a troll, and I reckon he/she/it is blocked by most people in this forum. To constantly criticize organizations who try to good, without knowing the full story of why they did what they did, can also be negative for the patient community and for the progress of ME worldwide. I do believe DwME want to do good, and I trust people who say they have a plan. It is always worth trying out a plan, even if it's not perfect, not least because we don't have the energy to put forward and go through with a replacement plan by ourselves. So those with the energy to try something out, go for it!

That said, if this thread was aimed at the patient community, to try explaining in layman terms, it was a failure. I struggled lots, especially with the first thread. Incoherent language is not easy to interpret for a fogged brain. I would suggest them getting a communications officer, to convey messages in an easy to grasp way, for the patients and their carers.
 
tomnext said:
...Incoherent language is not easy to interpret for a fogged brain. I would suggest them getting a communications officer, to convey messages in an easy to grasp way, for the patients and their carers.
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I am more concerned that they are pitching their content at professionals and claiming that professionals would have no issues with their content, which I very much doubt is the case.
 
Dx Revision Watch said:
I am more concerned that they are pitching their content at professionals and claiming that professionals would have no issues with their content, which I very much doubt is the case.
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Oh yes, I agree that it would be difficult for professionals as well. I have 10 years of higher education, which should make me be able to understand most. My hobby atm is reading research papers, albeit my foggy brain makes it a bit hard from time to time. So it is quite telling that I had huge problems with thread no 1.

Though, I was thinking more along the lines of them needing another com person employed if he is supposed to be the communications officer towards the professional community. Something like a community outreach person, to make easy-to-read versions of the hard-to-read texts. Not necessarily translating all content, but giving abstracts and explanations of what is going on, so that their work is more rooted in the community. Would help them immensely wrt outreach in other countries, and us sick people have connections as well that could be useful for DwME.
 
Dx Revision Watch said:
Tweets #78 and #79 in the thread (yes, #78!):




Mmmm.


"Who can reply?
People @RRRR4tothe4 mentioned can reply"

I doubt "Reasonable people will understand"...


2nd thread unrolled - if you have the stomach for it:

https://threadreaderapp.com/thread/1566396344268472321
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Aww sorry but rather than comment on the actual tweets or person I just feel like I hate this sort of thing happening on social media (or wherever I guess).

I'm not really that old-fashioned in the reason behind me saying certain vehicles/mediums are designed to be short and punchy soundbite rather than nuanced and caveated for a reason - tending to feed controversy.

I'm getting the feeling that DwME perceive this ie s4me as 'the same thing' where many of us would see it as somewhere to discuss and spitball in order to get right what might go onto social media.

Are we wrong in this perception of s4me or are they? Are we thinking wouldn't it be nice to debate things out first, when they would see such an 'opportunity' as back-handed invited onto 'someone else's territory' type thing instead? I guess that is the thing with perceptions, each is correct in their own - and some feel safer with visibility and have a point that this isn't 'private'.

We do all need to understand each other somewhat and communicate as you'd hope that intentions unite us in many areas, will overlap, bring in different angles etc and we've both got other directions our energy could be focused in. How can this be brokered - is this new for a reason/something new happened or still the same issue?
 
Dx Revision Watch said:
Tweets #78 and #79 in the thread (yes, #78!):




Mmmm.


"Who can reply?
People @RRRR4tothe4 mentioned can reply"

I doubt "Reasonable people will understand"...


2nd thread unrolled - if you have the stomach for it:

https://threadreaderapp.com/thread/1566396344268472321
Click to expand...


What is a pluralist community....?
Me.. BA Hons (first class), .... E Dip/ Part 1 B Ed, Dip Cartography..........:nailbiting:

Pluralism assumes that diversity is beneficial to society and that autonomy should be enjoyed by disparate functional or cultural groups within a society, ..
 
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