#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

I'm divided. I 100% agree with what you are saying, and I don't think it does much for longevity of any issues if they haven't anticipated that working out how to spend something well might end up being the harder task than getting the money

I know there is a chicken and egg situation going on re: funding, but historically we've been played pretty well for many years with claims of 'there's funding but noone seems to apply' - and has anyone confirmed what's actually going on there, are there some weird criteria or something ? I think this issue is worth dissecting too.

Out of curiosity there was a post a year or two back of I think Action for ME advertising for a research admin type role that was at least reasonably (but for the level of qualification you want not 'brilliantly high') paid - I can't remember the details at the time but it seemed to be about trying to get a bit more organised into a strategy of what was needed. I assume it might have been able to pipeline support with funding applications and also scouting those who could have useful skills and just don't know enough about the condition and how to put those two together also.

Does anyone know more about what ended up happening with it?

On the other hand the only campaigns that are going to do well I think for ME currently are going to be the ones that talk about cure and moving things properly forward. It just isn't sexy and pretty hard to get across how 'worth-having' and 'important to reduce unnecessary intolerable hardship' it is for someone who is severe or very severe to get an extra 10% health (if even that was possible from a combination of carefully managed treatments and sorting out the environment etc over time), because it means they can now wash themselves sometimes and/or get the odd bit of social contact vs the hell of the dark room.

But 'treated properly' might work given they've coordinated timing with the inquest so hopefully people know there is an actual issue (though that comes with the usual catches of people who claim their initiative is just that 'special treatment' that puts laypersons mind at rest whilst not really making things much better)

Much easier to sell a happy ending that laypersons can relate to vs the people who respond to campaigns to keep someone in an awful situation's head above water seems to be the truth on what gets traction. And whilst you can't define 'it's not good enough' then we probably do need some follow through so that for once the most knowledgeable and experienced of what goes wrong patients are informing anything new to see through any 'catches', to avoid one of the really big issues I think that happens which is paternalism.

Even if something is 'slightly better than it was' but still misses the point on how our condition works and the cumulative impact of something that has good intentions but doesn't get offering someone a nice-seeming therapy or kind person is actually taking energy - hard one to explain to laypersons who aren't massively interested in hearing mounds of detail.

And to be honest I think a lot of those who have had ME badly enough have at some point thought to themselves that the only way out is indeed something that does help the actual condition enough because it feels an unsustainable state of being. SO it is absolutely the only thing that laypersons might think makes sense that we are asking for.

 

I'm only aware of the most obvious one, that given the state of our knowledge it's really hard to come up with strong enough cases for funding. We've got a whole array of hints, but very little that looks solid enough to move to testing in a major trial.

But you're right to question it. It may not apply in areas of research that aren't focused on uncovering the aetiology, for instance.

 

We have a decent number of interesting findings that need verification/falsification. As in small trials that have not been followed up on over the years that could well lead somewhere. I can't think of any off the top of my head right now but there are a number of studies that should have replication attempts.

 

Merged thread

BBC Breakfast Slot - #ThereForME

Seen this shared on Twitter, the #ThereForMe campaign have a slot on BBC Breakie tomorrow morning (27/8)

https://twitter.com/user/status/1828044753587282380


Something about this campaign seems to be getting some traction and I kinda hope that the slot doesn't have the usual AfME/MEA comment..

 

Curious what this campaign is doing differently to others from within the community that is seemingly getting some media cut-through.

 

Maeve's inquest preceded it.
Also the focus in this campaign has been on achievers eg those selected for the Olympics who became ill
It hasn't used the usual charities

 

That's a really good point, my brain hadn't connected the dots.

It also feels (and I mean this in the nicest way to other current/previous campaigns from within the community) a grown-up, serious campaign.

 

Plus it’s August – the “silly season” – which is always the easiest time to get things into the news media. And I think it’s a sign of the progress that has been made that the media is more receptive.

There also seems to have been something of a lull in hostilities from the Science Media Centre.

 

Merged thread

Segment on ME on BBC1 Breakfast TV, 27 August 2024

There was a short ~5 minute segment starting around 9:20am on BBC1 Breakfast TV this morning talking to a couple of individuals with ME, including Karen Hargrave. Introduced with a description of the symptoms including "extreme tiredness, brain fog, and insomnia" and stating that ME can be triggered by Covid 19 and is almost indistinguishable from long covid.

 

2 moved posts

https://twitter.com/user/status/1828345599848014064

 

Full clip 15 mins

https://www.youtube.com/watch?v=AuqthHADSWw

 

There was also a much longer segment earlier between 7am and 7.30 am.

 

I caught the 15 in slot at 07:15 approx.

Dr Weir and Kane both contributed solidly. The patient got across good points well about her and her partner. Also, the rower (apologies I forgot her name...) The interviewers looked deeply concerned and empathetic and interested. Recent press does feel much more real. Hopefully the narrative is changing. Only gripe was introducing the piece with 'extreme tiredness...' but that's it. A good effort.

 

Uploaded by Broken Battery. Very good segment, indeed!

 

7.15 am - 7.30am.

Dr Binita Kane was on the sofa and Dr Weir spoke remotely.

There was a film interview with a patient who was once an athlete (rower) and someone whose husband is very severely affected (I think she may have been the person I heard on the LBC phone in.)


Despite wincing at the introduction describing “extreme tiredness” (possibly taken from the NHS website) l thought the item was sympathetic and would be informative for someone who had no knowledge and wanted to learn.

Sadly as it is a news programme it will only be available on catch-up until 9.30am tomorrow.

 

Joan and Kalliope - we were posting at the same time

Thank you Broken Battery for capturing the segment and Kalliope for sharing it.

Well worth a watch.

 

This was a really good discussion article, very clear message.

ThereForME is gaining some momentum.

Well done and thank you to everyone involved.

 

https://twitter.com/user/status/1828393620338094504

 

This was ok, I guess good for the BBC but as a non British viewer I find it awfully “polite”, this British way of “keep calm and carry on”, don’t make too much of a fuss.

I wish the producer had created an edit where they dropped the politeness, where carers and patients are encouraged to speak with sadness, anger and urgency. Karen’s husband is like a corpse in a room, the severity of his situation was not conveyed by the production team.

Similarly — why bring the false hope about “lots of research is starting to happen”. No, it’s not!

I felt though that Dr Weir spoke with gravity about the most severe patients which was really good to see.

 

What I do find encouraging with some of this recent coverage is that the media outlets are not giving a significant platform to the BPS mob, which I feel would have happened only a year or so ago (maybe even less). Ok, Wessely got a statement on the LBC slot the other night, and, rightly so, given he and his impact was being discussed, but going back not that far, we'd have had one of them on the sofa countering or a lengthy statement, rather than it going unchallenged as it did this morning.

And, AfME only got a mention at the start wrt the 250k patients, the rest was left to people with with ME/LC and doctors who are involved (and not Doc Strain). All of which, I think, should slightly concern the charities. Well organised campaign(s) from within the community they say they represent are making more of an impact than they are in PR terms.

It will be interesting to see if/how this campaign continues to make headway.