UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day
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This refers to something called an Instagram reel. I've searched and can see that PG is on Instagram. If anyone else is, can anyone see if he's also posted similar comments with the blog on his account?
Paul Garner (@pgtropdok) • Instagram photos and videos
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jonathan_h
Senior Member (Voting Rights)
Feeling grateful for Beth. It’s remarkable how much she’s accomplished in so short a time. I don’t recall a more effective celebrity advocate since I joined ME/CFS social media in 2014.
Not that I have any insight into how she’s doing, but I’m a bit worried about her crashing from all this work. Hoping she can take breaks as needed despite the strong desire she must feel to push on.
Not that I have any insight into how she’s doing, but I’m a bit worried about her crashing from all this work. Hoping she can take breaks as needed despite the strong desire she must feel to push on.
It really is. I wonder of the way it stayed a sport story on the BBC for a while helped? Those journalists perhaps have a different perspective. And maybe they gave it the room it needed to break through that other areas don’t.
I share your concerns but also appreciation of what Beth and her family are doing. And hopefully she knows she’s not alone. Although she could probably do with some time to herself after this!
It's been noted over the years, and it has led to a bit of resentment from some in how it seems to present some people as more deserving of being believed, but it really shows how this is key to getting the story out there, to have accounts where all the usual nonsense simply comes out as nonsense.
In some ways the psychobehavioralists sort of killed that power by making up some fake personality disorders about "high achievers" and "type A" people and so on, but it only really worked by being generic, by talking about "some people" in a vague sense. When it's someone who is known to achieve at the highest levels it just comes out silly.
Because one person can't handle this. More are needed, it can't fall on a single achievement to keep it going, this would only hurt Beth's health. It's clearly hard for people like that to want to force the issue, though. There are plenty of such high profile people who are somewhat known to have it but keep it quiet.
This is the chart from the bimodal distribution paper, for the European data excluding the Norwegian data. I've been hesitant to criticise the finding of a 'peak in the teens and a peak in the thirties' for a number of reasons, but it should not be taken as a proven fact and people should certainly not be saying that 'the most likely times for onset are when people are in their teens or thirties'. The ages with the highest risk of onset among people diagnosed with ME/CFS in this sample are 30 to 45, with a substantially higher risk in that period than when people are in their teens.
So as to not take the thread off track, I'll post more about this on the bimodal distribution paper thread.
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How much used is it by them? And by any other advocate? I actually do now really need to unpick who and what input has gone into writing this (even if it seems the letter to itself was quick, it might be someone drafting it, or/and it is informed by prior briefing and working up of messaging whether done properly and deliberately or it depending on who gets talked to informally and things said at certain meetings)
I think it is such a serious issue that we could do with tracking this down for serious conversations to be had. So I'm asking the questions to try and find the real problem (that's ending up in this) because it's repeating so often someone has to try and work out what's going on
Can anyone who has any detail on who/which organisations are actually going into these briefings or is it output from committee anything etc?? here please provide some more or let me know by PM discussion so we can start trying to get to the bottom of this.
Is it just confusion or is it individuals we can work out who are 'helping' and is there some sort of group that these things are having to toe the line with on the 'messaging' (decided overall for all campaigns main learning points that we want to keep always getting across - it feels like this move to ME-like is eg one part of it and if we don't do something we will be having it pushed more, but that's only one of the 'off' messages I'm picking up on)
I need to know how organised this is to know whether it is inadvertent and accidents and down to someone being able to be heard if they try and support and help and highlight the issues or if this is being 'driven' as these chosen messages and who is behind that (which could be multiple people).
This is no longer in training wheels/inadvertent hopefully it'll be got right territory as these things keep repeating so aren't inadvertent and either habits accidentally baked-in or are the strategy and aims of communications.
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I'm aware that this 'letter to' is a bit unusual because it is referencing 2 articles - so it is linking to Beth's campaign merely because that's about ME/CFS in 'some way' and then it's really about those with the wider ME-like symptoms and work? Sadly these two things completely contradict each other to the extent of undermining the points of one that is actually in the public space at the moment
- the art of communications is to know when not to go in muddying something and blow it, and if you have to talk on something else to then your focus is knowing the messaging and communication points/aims of that other thing to make sure you've carefully managed the segue between the two. Talking about ME-like whilst a campaign about severe has carefully built up to get to this point is not that.
I'm reading through this one about NEETS to see if it even tangentially talks about disability/chronic illness, nevermind ME/CFS directly and will make notes on what it is.
From first glance I am still missing a why / precursor in this NEETS article it warranted talk on ME/CFS (particularly that was anything that was conflicting with Beth's messaging by not following that lead), I'm trying to do good grace in looking through it to see what might have been the thinking by studying the words and related articles.
- the art of communications is to know when not to go in muddying something and blow it, and if you have to talk on something else to then your focus is knowing the messaging and communication points/aims of that other thing to make sure you've carefully managed the segue between the two. Talking about ME-like whilst a campaign about severe has carefully built up to get to this point is not that.
I'm reading through this one about NEETS to see if it even tangentially talks about disability/chronic illness, nevermind ME/CFS directly and will make notes on what it is.
From first glance I am still missing a why / precursor in this NEETS article it warranted talk on ME/CFS (particularly that was anything that was conflicting with Beth's messaging by not following that lead), I'm trying to do good grace in looking through it to see what might have been the thinking by studying the words and related articles.
OK so this other article: https://www.thetimes.com/uk/politics/article/john-healey-welfare-bill-benefits-spending-26nmvh8c2
that is the 'other' mentioned in Tessa Munt's letter to (Beth's campaign being the other)
is indeed focusing on NEETS and Milburn's planned approach
It does not mention ill health or disability in the entire article - other than that those who will be tasked with relentlessly chasing those who don't turn up for work or education will include a mental health person.
So even though that issue might be implicit as a question to those in the know who know that might include the disabled or ill 'whatabout if people are ill' it isn't actually even offering an excpetionalism phrase of 'we'll of course have measures regarding that', just doesn't touch on it so most will be assuming this is mainly talking about just the unemployed
It is focusing on things like:
that is the 'other' mentioned in Tessa Munt's letter to (Beth's campaign being the other)
is indeed focusing on NEETS and Milburn's planned approach
It does not mention ill health or disability in the entire article - other than that those who will be tasked with relentlessly chasing those who don't turn up for work or education will include a mental health person.
So even though that issue might be implicit as a question to those in the know who know that might include the disabled or ill 'whatabout if people are ill' it isn't actually even offering an excpetionalism phrase of 'we'll of course have measures regarding that', just doesn't touch on it so most will be assuming this is mainly talking about just the unemployed
It is focusing on things like:
AfME and MEA traditionally brief the APPG, and Tessa Munt is writing in her position as Chair of the APPG.
But it could also be coming from the stakeholders (whoever they all are) connected to the ME/CFS Final Delivery Plan.
The stakeholders hold a lot of sway, for example, only they have seen the yearly update report of what stage various aspects of the FDP are at; it has not been published. It's possible they also have her ear.
Found the Stakeholder group name in a parliamentary Q&A 27 May 2026.
Edit: also noted a little porky pie at the end of the Minister's reply. As the public awareness campaign "expected by May 2026" has not happened.
Edit: also noted a little porky pie at the end of the Minister's reply. As the public awareness campaign "expected by May 2026" has not happened.
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I think your concerns are valid @bobbler
It may be that Tessa Munt is attempting to leverage the following statement from the Ministerial Foreward to the publication of the ME/CFS FDP when comparing with NEETS.
However, I think a better comparison would be with whatever the Timms review on sickness benefits reveals.
Also, if she's writing as Chair of the APPG for ME she should stick to evidenced figures and focus as above.
For example, the HERITAGE study, mentioned in the FDP, includes LC and ME/CFS, but it cites prevalence of the two conditions separately; 500,000 and 1.9m.
If her aim was to try and increase funding for SequenceME (which also includes LC patients as a cohort), then perhaps a joint letter from both the APPG on ME/CFS and the the APPG on Long COVID would have been more impactful.
But I think this continued blurring is only going to be counter-productive.
I wonder if these million plus figures for ME/CFS are being arrived at because of this published May 2026.
ME/CFS Prevalence in the Long COVID Era: A Corrected U.S. Burden Estimate Using Infection-Associated Chronic Condition Modeling
It may be that Tessa Munt is attempting to leverage the following statement from the Ministerial Foreward to the publication of the ME/CFS FDP when comparing with NEETS.
However, I think a better comparison would be with whatever the Timms review on sickness benefits reveals.
Also, if she's writing as Chair of the APPG for ME she should stick to evidenced figures and focus as above.
For example, the HERITAGE study, mentioned in the FDP, includes LC and ME/CFS, but it cites prevalence of the two conditions separately; 500,000 and 1.9m.
If her aim was to try and increase funding for SequenceME (which also includes LC patients as a cohort), then perhaps a joint letter from both the APPG on ME/CFS and the the APPG on Long COVID would have been more impactful.
But I think this continued blurring is only going to be counter-productive.
I wonder if these million plus figures for ME/CFS are being arrived at because of this published May 2026.
ME/CFS Prevalence in the Long COVID Era: A Corrected U.S. Burden Estimate Using Infection-Associated Chronic Condition Modeling
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That’s a really good point. We need more people to step up so it’s not just a single voice but a crowd, a clamouring, or hopefully more unified than that may imply but that could be the problem, getting people to come forward but also to unify around a single message.
We did have a bit of a discussion on what that could look like https://s4me.info/threads/our-own-delivery-plan.45305/ and what the messaging could be https://s4me.info/threads/there-are...nd-will-support-you-until-we-find-them.48496/
There are no effective treatments for ME/CFS
Invest in research to find them
Give us appropriate support until they’re found
Chandelier
Senior Member (Voting Rights)
There was a comment under the recent Paul Garner X Post that might be relevant:
Replying to @PaulGarnerWoof
As admin of a support group for athletes and someone who did recover, I really think you should go find another weird obsession. There is no difference in drive and treatments between those who recover and those who don’t. It’s pure luck. You don’t appreciate yours enough.
Perfectly put.
Trial By Error: Olympian Beth Dobbin Appeals to Prime Minister for ME/CFS Research | Virology Blog
By David Tuller, DrPH Last month, the BBC covered the situation of Beth Dobbin, a champion sprinter who has been so disabled by ME that she is “bedbound for ...
virology.ws
Some posts have been moved to: The Recovery Channel, Rachel Whitfield and Paul Garner
'She obviously has no self belief, determination, manifestarion skills (!) Utter idiots.'
Hello again.
Look. You are welcome to critique brain retraining all you like. But could you at least please, PLEASE critique what it actually is? Otherwise you're doing harm.
Brain retraining is not about self-belief, manifestation, luck, drive or "manly thoughts" (David Tuller I'm looking at you). By repeating this over and over you're only showing those in the brain retraining community that you aren't engaging properly with anything that is said and then why shoud they (we) engage with you? It's a waste of our time.
There is masses of free information out there about what brain retraining involves. Look at any content by Howard Schubiner to start with if you want. It's a kind, trauma-informed tool. It takes some elements from mindfulness, afterall. There is no threat in it.
Brain retraining involves getting to know your own feelings, your triggers, your body and your relationships. It's core is about teaching a deep sense of physical safety. It's nothing like what you're all portraying it as. It's a shame.
The above post has been copied to the Members Only Brain Retraining discussion thread, and replies to it have been moved there.
If you wish to discuss Brain Retraining, please go to that thread.
If you wish to discuss Brain Retraining, please go to that thread.