UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day

[MrMagoo]

"That is why we are supporting cutting edge research into ME, including a first-of-its-kind programme studying genetic factors behind the condition and projects exploring a future clinical trial of potential treatments.

The wording has been changed to something closer to being justified based on facts. While still dangling potential new treatments to make things seem more advanced.

Interesting change.


That may put the vagus nerve stimulator feasability study in the frame.

 

[SNT Gatchaman]

Some comments from this Reddit thread presumably in relation to Garner's post —

Absolutely hilarious thinking a person who is in the top five in the world for their sport, so top five out of what 7 billion people , yet it's their negative thinking that's the problem. I mean f me! She just needs to change her thoughts! She obviously has no self belief, determination, manifestarion skills (!) Utter idiots.

I won gymnastics nationals 2x, have 3 other silver national medals, competed at world championships, could literally lift heavier than my very strong boyfriend (except bench press and curls) would absolutely annihilate anyone who tried to work out eith me. And this was years into already having symptoms (not diagnosable yet, obviously), have a degree in exercise science, was an exercise therapist and personal trainer, and worked in this field for 24 years. Not one Dr. Believes me whne I mention any of that. Just that I'm choosing to be bedbound 23 plus hours a day. Make it make sense.

Very weird response to reading about an Olympian athlete talking about how she had access to the best healthcare and still there was nothing to help her.

I, like so very many of us, took a similar route. For years I told myself it was all in my head, I just needed to try harder! I kept ignoring symptoms, pushing myself, and reaching for my dreams until my body also gave out and I became severe. It was accepting my limitations and learning to pace that gave me any semblance of a life back.

And even with that, even 16 years into this, when I have periods of time where I really turn a corner I start thinking, heeey maybe I’m not sick! I feel ok! I start engaging in life outside of the house a bit more, start dreaming a bit bigger, etc., and every fucking time I decline and my baseline lowers!

Some random person thinking they have more mental resolve and motivation than a literal Olympian is some of the most condescending and patronising shit I’ve heard.

 

[Maat]

Some comments from this Reddit thread presumably in relation to Garner's post —

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

578 Followers, 2,017 Following, 528 Posts - See Instagram photos and videos from Paul Garner (@pgtropdok)

www.instagram.com

 

[Mij]

His Instagram profile is 'private', so no one can see what his posts. You have to click on "follow" for a request.

 

[jonathan_h]

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.

 

[hotblack]

Feeling grateful for Beth. It’s remarkable how much she’s accomplished in so short a time.

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!

 

[rvallee]

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.

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.

 

[Hutan]

Tessa Munt also writes: “Most develop the illness in their teens or thirties”

The most likely ages for onset are when people are in their teens or thirties but I don’t know if it’s accurate to say that most people with ME/CFS developed it in the teens or thirties. Can someone clarify?

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.

 

[bobbler]

I think the phrase "ME-like symptoms" may come from AfME - it's a phrase they've used before to refer to the number of ?ME/CFS-like cases who have been diagnosed with LC.

The problem with the phrase is that any health professional reading it will just assume that it's a euphemism for "psychosomatic", same as MUS or PPS. Also, it's the wrong emphasis: for advocacy purposes, we want ME/CFS to be conceptualised as a discrete illness with its own distinct patterns & dynamics, not a motley collection of unexplained symptoms.

And they're still using a prevalence estimate that is almost certainly wrong.

How much used is it by them? And by any other advocate?

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.

 

[bobbler]

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.