United Kingdom: News from Forward-ME Group

Minutes from 10th July 2020, https://www.actionforme.org.uk/news/minutes-of-forward-me,-friday-10-july/

1. Update from Sonya Chowdhury on DecodeME and ME/CFS Priority Setting Partnership.
2. Education
3. Previous minutes
4. Matters arising
4.1 Medical Education
4.2 NICE Guideline Development Group
4.3 Whitehouse Publications
4.4 DWP
4.5. RCGP Conference
4.6. Research
5. Post COVID19 concerns
6. Child Protection
7. Forward-ME website
8. Priority Setting Partnership
9. AOB
 
Carol then spoke about Post-COVID fatigue. She felt that the use of

the word ‘fatigue’ gave a false impression and she no longer refers

to CFS when talking about ME. The Chairman mentioned that in the

PPI there had been a discussion about the need for a word other

than ‘fatigue’. She asked the group to think about a word that

would signify the severity of the symptom. Christine Harrison gave a

graphic description of the awfulness, but the Chairman asked for

just one word.
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Debility
 
NelliePledge said:
Who writes these minutes I feel like a record with the needle stuck for going on about this a lot but the long blocks of unbroken text are really too hard to read. I want to email them to ask for it to be addressed.
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Agree, but I think it's because they're a hybrid between minutes (where only questions and decisions are noted, usually with one paragraph for each point/contribution – which they've done) and an article, where there'd traditionally be a lot more para breaks.

If it helps, you can double space it with one control? I don't find that helps me, though, so I've got used to going through articles pressing 'return' every few lines, them going back later to actually read it. I have to do this even with articles where there is a good number of para breaks; I think the maximum number of lines someone can read together is a bit of an individual thing, so it'd be hard to get it right for everyone.
 
Kitty said:
Agree, but I think it's because they're a hybrid between minutes (where only questions and decisions are noted, usually with one paragraph for each point/contribution – which they've done) and an article, where there'd traditionally be a lot more para breaks.

If it helps, you can double space it with one control? I don't find that helps me, though, so I've got used to going through articles pressing 'return' every few lines, them going back later to actually read it. I have to do this even with articles where there is a good number of para breaks; I think the maximum number of lines someone can read together is a bit of an individual thing, so it'd be hard to get it right for everyone.
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.

Ok but this is for an ME organisation they need to make it easier without people having all that extra hassle. Thanks for suggestions unfortunately I don’t know what one control is I’m on an iPad mini and I can’t easily access this document in an editable format. Sorry if that’s a bit grumpy I realise it’s not down to you @Kitty
 
NelliePledge said:
I’m on an iPad mini and I can’t easily access this document in an editable format. Sorry if that’s a bit grumpy I realise it’s not down to you @Kitty
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Sorry! As it's a MS Word doc, I assumed you'd either be reading it with Word or a WP app on a tablet.

By saying one control, I just meant that you can double-space the entire text by just pressing Ctrl+A for 'select all' and then choosing double spacing in the Format/Paragraph menu in Word – so it's easy and quick to do if it helps.
 
ME Research
Top 10 takeaways from Forward-ME Group Meeting on 10th July 2020
Posted on 23 Jul 2020
For ease, we provide particular points of interest from the latest Group Minutes. These points are not summaries of the entire area under discussion and ought not to be viewed as such. The exclusion of points raised or details discussions arising does not imply denigration of the topic but rather the pressures to condense a most informative and full meeting into a number of points.
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https://www.meresearch.org.uk/top-10-takeaways-from-forward-me-group-meeting-on-10th-july-2020/
 
Sly Saint said:
ME Research
Top 10 takeaways from Forward-ME Group Meeting on 10th July 2020
Posted on 23 Jul 2020


https://www.meresearch.org.uk/top-10-takeaways-from-forward-me-group-meeting-on-10th-july-2020/
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· Dr Louise Crozier (ME Research UK’s Science and Engagement Director) gave a brief review of the projects that ME Research UK had funded and gave an update on applications in progress. Two projects have recently been funded to the extent of £100,000 and 9 applications received that are looking for grant or PhD funding. The total requested is £1.1 million, but not all the applications will be successful.
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Good to see though simultaneously sad to ponder they wouldn’t have the money to fund most of them.

More money needs to be raised privately to ensure a wide mix of researchers in the field
 
Some things that caught my attention.

About the decode ME project
She explained that, despite the criticism of the
CMRC for not doing much, they had in fact held numerous meetings with
potential researchers and funders. At the end of last year, they were
invited to submit an application that was not open to competition with
any other research groups or illnesses.

...

It was important that PPI
was embedded in every aspect of the project. Both the MRC and the
NIHR regarded this as being critical and was one of the key reasons for
funding. They regarded this as the first time for a community come
together for what they expect to be the first of more research – called a
‘door opener’ by the funders.
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On the department of work and pensions:
The Deputy Chairman reported there had been no major moves
since the meeting with the Minister in June 2019. There did not
seem to be many problems reported by MP’s constituents. These
were usually a good measure of the situation. It seemed that the
DWP were aware that MPs were watching not just ME cases but
also, others with medically unexplained symptoms and non-visible
disabilities.
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On MERUK funding:
There were two more projects that MERUK had recently funded to
The extent of £100,000. One will be a follow-up to the Belgium
looking at potential factors in membrane. There are 9 applications
that are looking for grant or PHE funding. The total request is £1.1
million, but not all the applications will be successful.
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Forward-ME Group Meeting Minutes – 9th September 2020

Summary of the minutes from ME Research UK.
Full Minutes from the Forward-ME Group’s virtual meeting on 9th September are now available.

For ease, we provide particular points of interest from the latest Group Minutes. These points are not summaries of the entire area under discussion and ought not to be viewed as such. The exclusion of points raised or details discussions arising does not imply minimise the importance of the topic but rather arises due to the pressures to condense a most informative and full meeting into a number of points.
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https://www.meresearch.org.uk/forward-me-group-meeting-minutes-9th-september-2020/

Direct link to full minutes, https://www.meresearch.org.uk/wp-co...-ME-Minutes-Meeting-09-September-02.10.20.pdf
 
Interesting: Sean O’Neill, Chief Reporter to the Times, was present and discussed strategies to get positive press for ME. He said for example:
Entry into the media was not just about transmitting a message that was important, expecting it to be picked up and responded to. It very rarely worked. Engagement with the journalist with an interest in the subject was essential. Contacts and personal initiative and connections in order to find the right person to take on the story were necessary

...

He had never had any dealings with SMC. He recommended ignoring them rather than entering combat.
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There was also a discussion on spinal surgery for ME patients, following Jonathan Edwards request to make a statement about this.
 
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Andy said:
ME Association's article about the minutes here, https://meassociation.org.uk/2020/1...om-the-meeting-09-september-with-sean-oneill/
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He felt that SMC influence was diminishing. It was better to concentrate on credible media outlets
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:giggle:

It's beyond time the SMC's role and mission be reevaluated because it was literally created for the exact opposite purpose it is currently serving. Sorry, I meant self-serving. The impetus to create it, so that there would be a reliable, neutral, source of information that would not do that, the thing it has been doing for years. It is currently serving largely as a propaganda outlet, with a side-mission of cherry-picked media seeding.

Basically like creating a special commission dealing with a string of arsons and years later that commission is basically staffed entirely by arsonists, arson enthusiasts and fire-researchers-with-dubious-morals-and-who-really-really-like-fire-it's-so-shiny. And somehow people who make money out of arson. Oddly enough.

I know! Let's create an arson commission to investigate the current arson commission that is tasked with investigating arsons. But let's keep the current arsonist-filled arson commission going, somehow, because reasons. That's about the model for learning lessons about Long Covid based on the ME failure without addressing the larger ongoing ME failure. Not to diminish Long Covid, not even a bit, but when you multiply a larger number by decades, it rapidly becomes outlandishly larger.

I really appreciate O'Neil's efforts. Really brave, knowing how it went in the past when people challenged the Wessely machine of doom.
 
rvallee said:
It's beyond time the SMC's role and mission be reevaluated because it was literally created for the exact opposite purpose it is currently serving. Sorry, I meant self-serving. The impetus to create it, so that there would be a reliable, neutral, source of information that would not do that, the thing it has been doing for years.
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How is it known that its stated purpose was its intended purpose?
 
Sean described the huge impact that the pieces on DecodeME had online. There was a lot of incredibly positive feedback. Emphasis should be on the positive steps around DecodeME and, he hoped, on the new NICE Guideline, as well as the international progress that was being made. This was better than expending energy in engaging with the psychiatric lobby which was becoming redundant.
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The psychiatric lobby does seem to have lost some of its vitality in recent years. Wessely is still trying to influence the NICE guideline with his recent paper that supposedly shows how well CBT works. Let's hope that was his last stand.
 
Sean O'Neill

This was better than expending energy in engaging with the psychiatric lobby which was becoming redundant.
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I appreciate the guy's input - we need all the help we can get but I wonder if he realizes the true scope of the matter here. It's a bit like seeing a tree & think all that you see is all that's there - nope -hidden away are big roots branching off into increasingly smaller roots & into tiny hairs & the microscopic fungi spreading out far and wide.

When the BPS cabal aren't fighting back or seem quiet, that's when you need to keep a good eye in them. They're plotting something. Look how long IAPT was in the planning, many years before it came to our attention & we're keeping our eyes peeled.

I'm not sure I agree with not engaging with misinformation spread by the SMC either. Allowing misinformation to spread is to continue to allow people to be discriminated against. It is in some of those exchanges that we have won allies.

I believe that when the SMC spouts nonsense then using the opportunity to have a conversation on social media allows a wider audience to become familiar with the issue & make up their minds having heard from both sides.
 
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