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

Don’t forget that the campaign is supported by:

Action for ME
Co-EQ
Crunch ME
Hope 4 ME
Fibro Northern Ireland
Keyworker Petition UK
Long Covid Advocacy
Long Covid Kids
Long Covid Nurses & Midwives UK Long Covid Physio
Long Covid Scotland
Long Covid SOS
Long Covid Support
ME Action Scotland
ME Action UK
Not Recovered UK
Physios for ME
Supporting Healthcare Heroes UK
The ME Association
The ME Research Collaborative
Patient Advisory Group

So the charities are not excluded. I think having the support of so may different organisations, without being run by any one of them, is one of the campaign’s strengths.

I hope they will reach out to S4ME or vice-versa – and some of the other organisations like ME Research UK and IiMER who aren’t currently listed.

I would be good if we could have a discussion with #ThereForME on here.

 

LC advocacy is much more confrontational and direct, in contrast with the ME charities that have been muzzled by an effective demonization campaign leading them to adopt a "please may we have another" mindset. There is just much better reception to their message, even though it's the same. Editors still routinely choose to remove any mention of ME on articles about LC. So do many academics, even when they somewhat understand the importance of PEM in LC, and cannot possibly be unaware where the term comes from (even more so if they use PESE while opposing the updated NICE guideline). The old ways are too ingrained, have been around for too long to be questioned openly.

So they are bound to make more of an impact, and will until ME advocacy regains its footing. But it has been 2 full decades of very effective demonization, it's very hard to overcome this much mass stacked against you, especially when you move slowly. The campaign may have mainly taken place in the UK but it has spread everywhere.

This is why I'm generally not concerned with LC taking more space. I see no future where LC sees effective progress that doesn't affect us just as much, we are only left behind if they also are. But the effectiveness of the disinformation against us has been incredibly effective, it's a sight to behold, textbook Art of war stuff. I think it's safe to say that we have been made to out-leper leprosy. All on purpose. By the very same people we are supposed to convince in order to get our lives back.

At some point the charities will have to turn into a more offensive messaging, but I think it's still premature. Joint campaigns are definitely what will work best in the end. For both communities. For all our sakes.

 

I feel like the younger generation, many with LC have got the social media skills and savvy (clear messaging, strong case studies- not just ability to create a hashtag) plus the LC generation don’t have our war wounds. They all very obviously became unwell at the same time, after a virus. They have never accepted the BSP maybe you’re depressed, neurotic, not trying hard enough, perpetuating your own cycle.

ETA Whatever the reason for the charities being a bit softly, softly, I think it suits everyone to have a separate, more fiesty activist campaign.

 

I found it interesting the comparison Dr Weir made between meningitis and ME (particularly the more severe form) and that in the past (and maybe still now?) curtains were drawn around the beds of meningitis patients to shield them from bright lights. It could be a useful comparison for advocates, clinicians, etc. to make.

 

When I was first ill and suffering my GP suspected meningitis so sent me to hospital. Which resulted in me being told there was nothing wrong with me, maybe I had a migraine, and obviously the whole experience made things worse for a long time.

The point about a a generation with social media skills is interesting. I also wonder how much attitudes towards and awareness of mental health issues being different now help. The impact of a lot of people all getting ill at the same point probably helps too, and after an illness with such widespread impact as covid.

Good to see the campaign getting pick up. It’s one of the first times I have ever had friends contact me saying they saw something about ME.

 

Merged
I cant find a thread on this, apologies if I missed it

It has a few issues, but generally good, i think a lot of people watch 'breakfast telly'

BBC Breakfast ME/CFS and Long Covid (youtube.com)

ETA ... Warning - it does contain the "extreme tiredness" cringe maker... but still, for the BBC pretty good overall i thought, and well done to Karen and Drs Weir & Kane

 

ME Research UK have produced a fairly detailed text summary:
https://www.meresearch.org.uk/bbc-breakfast-features-me-cfs/

 

Is BBC Breakfast a popular show? sounds like it but who watches it?

 

perhaps not for this thread specifically but I'm thinking of this quote/research, and the 'known knowns' of those who are currently and have been in hospital and had horrific experiences eg Karen, Carla, Millie, Alice, and I won't list anymore because I will end up leaving out people whereas these are just intended as examples.

I think it has become time that we also need some more research to find out all the other 'bad pathways' people could end up stuck under and might never even be identified even if they died because of 'additional diagnoses' etc. such as people getting shipped into NHS or private mental health situations.

Maybe there are some people who get good care or 'better' ie less harmful and we are all so very understanding of the situation of the hospitals or whatever at the moment so we categorise it as that. But is that these days even happening? I mean we can assume there is some 'safe care'.

It feels like we need, particularly for those who are severe and very severe, some proper monitoring mechanism to stop their outcomes and what happens to them being disappeared and find out what is the state of play today.

Is the term really that there needs to be some form of 'surveillance' ie in the technical term where it is being used research-wise to see what is happening when people enter a system.

I also think there are lots of tricks and 'cracks' being used where people are getting trapped in that further need elucidating. We need to know these so we can plug them to make people safe and stop one pathway from just being switched to another dangerous one. But also I think it would really show things up to be able to plot this 'chart' - and I suspect there are initiatives and pathways and decision charts behind these things, we just need to start with the big picture to see where people are being sent. Or what issues are coming up. Is it really, even, just down to 'don't know'.

Prior to this the attack of people's testimony has been on major hurdle to this, particularly where an insinuation of 'maybe it was a mental health complication and there is more to it' is assumed as some excuse behind the story. I imagine this might cause some fun in even allowing a dot to be put on a graph for some individuals - can these things come with some sort of censorship? But we, or ideally if things are really changing somewhere in the system or oversight, need to plot what is really going on. where are people ending up getting sent and what is happening to them. I think one path/issue is becoming a bit clear/more obvious because of this, are there others?

But are there actually patterns - and I think the LBC stuff showed to me how being able to find a way to get everyone counted helps switch the picture from it being one example people can write off to it being a bit more obvious, and importantly switching the focus from it being a 'pwme issue' to a 'how people are treating/seeing/dealing with pwme issue' when we start building up those pictures. And those commonalities can try and be sold as 'due to personality types' or other nonsense, but really c'mmon.


And of course at that level of severity people hesitate for even small procedures that are planned because of the impact on their health. SO things don't need to mean someone gets stuck for 6months in a bad situation for serious unnecessary harm - even being stuck on a plastic chair for 12hrs or noisy wards with exertion from being talked at for many days leaves a difference in debility that is very significant: it just seems to be written off.

 

It runs from 6am to 9:30am weekday mornings on BBC1 and is one of the main breakfast television programmes in the UK that runs regular news, current affairs and interest pieces, the main alternative on terrestrial channels being Good Morning Britain on ITV. I would think it gets good general ratings for morning day time TV, including viewers that put the TV on before going to work in the mornings.

 

It’s upwards of 6 million viewers, mainly over age 55, few under 25. It’s less populist/more cerebral than its rival on ITV, there are really only BBC, ITV and SKY if you’re watching at that time (or you want to watch cartoons!) it’s got prestige.

 

There's a short editorial in BMJ Evidence-Based Nursing ("Building an NHS that truly supports people living with long COVID and ME: government action needed now" by Alison Twycross, Brian Hughes & Karen Hargrave) regarding the #ThereForME policy brief & campaign:

Link | PDF

 

I must say I do like the fact that most articles and interviews etc in the UK seem to be using just 'ME'; ironically it is almost beginning to make the use of ME/CFS sound very passe' .......(?)

 

Thanks for sharing this. #ThereForME continuing to gain traction.

Good to see them collaborating with Brian Hughes. Do we know Alison Twycross?

It’s strange that BMJ Evidenced-based Nursing lists it as an editorial. Editorials usually express the view of the publication’s editors – normally written anonymously. Does the fact that this commentary is listed as an editorial mean that the journal endorses the views? Or do BMJ journals list all commentary pieces (which might be called op-eds in a newspaper) editorials?

 

Interesting. Looking at it I doubt it's Brian Hughes the psychologist as the affiliation is listed as a charity rather than a university. Twycross seems to be a nurse who is also a Long COVID patient & her ORCID profile shows she's an editor of the journal.

ETA: "Living with Long COVID: some reflections 14 months down the line" from 2021 - https://doi.org/10.1136/ebnurs-2021-103449

 

Thanks. She is also Chair of the charity Supporting Healthcare Heroes UK: https://shh-uk.org/meet-the-team/

Brian Hughes is listed a trustee of the charity on the website (with no further info) but he’s not listed on the Charities Commission website, so possibly a new trustee. I guess you are right that it’s not Prof Brian Hughes.

 

Tbf (and I know we don’t want to start this off as a side thread) I’m glad to see ME

but I’d rather ME/CFS as an acronym started to embed and everyone forgot what it stood for because it’s all misleading. So there is a sense of there being one issue when ME is used because they then use ‘otherwise known as chronic fatigue syndrome’ as a descriptor which is a bigger problem than ‘CFS as an acronym and being able one day to get a proper ‘you get PEM and deteriorate when you go over threshold’

I guess currently they’d still insert that addendum anyway even if me/cfs was used tho?

I say this because getting rid of the fatigue but seems increasingly important due to all the functional, Mus embedding of structures in all state services and an increasing rather specific twisted version of what that is to boot

plus of course since lockdown everyone became much less sympathetic with ‘tired’ and all thought they had so much worse time than the next person. Currently it’s the cksssic ‘I’m so busy’ whilst not realising it’s nice things that are underneath it choices like parties or swimming lessons we can’t do as all our energy is taken by medical and forms and hardly stretches to the relief of tooth brushing or a shower before we feel awful.

And that because even when being kind they think they relate you get kind gestures like ‘yes go and walk to the library for a20min rest reading a book with some music on’ being believed as good ideas from bps and BACME types

They might be tired and think it’s chronic but they don’t get the issue is ‘threshold’ and illness levels that are far beyond what their ‘tired’ involves. They probably know one day they can have a week off and feel less tired. Imagine how different it would be to sleep for a week and feel ‘better than before’ but not be able to lift a drink to your mouth at certain times of day or be sure to shower in a week even if you cleared it if all other things.

They have their functions to keep their job without feeling panic they know their body is letting them down. So of course it isn’t a worrying illness.

it’s like someone who says they are broke because they spent all their money on fun stuff and they mean ‘for now’ because they’ve a new salary next month and as soon as they choose to spend less then they aren’t … being conned into thinking those bankrupt or living on the breadline or both are ‘in the same boat’ .

Because of the ambiguity of the phrase they are led to think it’s a state of mind that we’ve actual functional limits and differences to them

and all the old blurb and fatigue concentration all ever was because since 2013 bps knew their therapy did nothing for function - so that was actually the ‘heart of the condition’ (as even if you get people to think they are less fatigued their health can get worse and their function isn’t linked to that)

but they are supply-led and wanted to sell something so doubled-down on the ‘fatigue’ idea. Slowly moving it from the ‘can’t’ into a ‘feels’ territory

 

My ME actually progressed in severity due to contacting viral meningitis and spent a week in hospital with it. But nurses still kept opening the room blinds. It's what led to my eventual diagnosis. There's a lot of talk of long term "after effects" in support forums, which describes ME in all but name.

 

I only like ME/CFS because it’s an easier search term online than “ME” which is a nightmare.

 

Post from Linkedin re the Br

Brian HughesBrian Hughes • 3rd+ • 3rd+Recently retired NHS executive, but not finished yetRecently retired NHS executive, but not finished yet6mo •

• 6 months ago
  
  So today marks a personal milestone in my life in the NHS. After 29 years of my executive career in the NHS, and spending 3 years living with the reality of Long Covid, it is time for me to finish this chapter, and look with optimism and belief on the chapters that lie ahead.
  
  I have been blessed to spend time in the company of many legends over this time, some of who occupy this platform, some who are complete technophobes they wouldn’t know how to turn it on, and too many who are sadly no longer beside us.
  
  As both a healthcare professional, and more recently as a recipient of healthcare, I am fortunate to have witnessed both the best of what the NHS has to offer, and possibly some of the worst. I am determined to use these insights to help others going forward. Despite the huge challenges facing health and care, I still have optimism that our staff will be the ones who deliver, despite the relentless interferences and reorganisations.
  
  I have without exception relished every role I have been fortunate to secure. I have learned so much from so many; I have been allowed to learn from my mistakes; and have seen others develop and flourish around me.
  
  This wasn’t in my plan, but as they say sometimes the best laid plans...
  
  So it is with mixed emotions that I say thank you to all those who I know and have supported me. And now onwards to new opportunities and using my knowledge and skills in new spaces.