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

Oh yeah my annoyance is at how it's almost always framed this way. Even worse when it's stated in a way that makes it sound like it's been over for a while. Oonagh did great here.

 

It's look a good campaign. Only concerns is that its alot for a small relatively new group to shoulder all at once, with alot of illness burden. They are essentially trying to be the coordinating force of alot of well established charities.

Cooperation and coordination is needed, and admiration for anyone who gets in the ring but the ME and LC groups are notoriously political and don't always get on well. Just wondering without a lot of previous networking they have taken on too much to chew.

Talking of chewing, some of the names on the letter raise concern (Chew Graham, Segal, Tyson). Are they aware enough that those with psych leaning will try and wiggle there way in. It's never a simple case of bio Vs psych as pretty much everyone denies they think it's psychological. It's usually much more subtle and people can think they've 'converted' someone but they're the one who end up being used.

 

Binita Kane, who is now an ambassador for #ThereForME, was interviewed on BBC Breakfast this morning following part 2 of Maeve’s inquest.

Discussion about the interview in the thread about the inquest starts here: https://www.s4me.info/threads/maeve...e-death-and-inquest.31707/page-82#post-556091

 

Long Thread by Binita Kane on Xitter:

Full transcript of BK’s thread:

For anyone interested in the pathophysiology of MECFS there’s a nice infographic here from this review article; https://jci.org/articles/view/150377 LOTS more research needs to be done of course. In clinical practice the vascular dysregulation is something I very much recognise​

Some of my bedbound patients have a raised blood lactate at rest, indicating that simply the energy required to stay alive has switched them into anaerobic respiration and oxygen consumption is outstripping supply 2/​

In less severe patients my colleague and friend @robinthephysio is finding reduced lactate thresholds, with patients switching from ‘green’ (aerobic) to ‘red’ (anaerobic) at low effort and heart rate levels - a key cause of PEM/PESE the cornerstone symptoms of ME 3/​

The root causes of this still need to be determined - immune dysfunction, mitochondrial dysfunction, endothelial inflammation, coagulation abnormalities, chronic infection or a combination. We need investment into the biomedical research 4/​

Challenges are that ME as a disease does not have a ‘home’ within a medical specialty as it affects all organs. Therefore there is no training of specialists, no academic research programmes and therefore very few grant funding applications being written 5/​

This requires the government and NHSE to start at ‘ground zero’, understandably it’s hard to know where to start with the scale of the problem and lack of specialists. We first need to get the right people in the room and have the right conversations 6/​

We start by doing ‘something’ not ‘nothing’ - as outlined in our letter the The Secretary of State, an immediate step is to create a commissioned clinical task force who can pull together treatment standards and guidelines (there are treatments!) 7/​

This would act as a group that could be consulted for advice if a severe patient ends up in a hospital with no internal specialists, or to support GPs to liaise with local hospital services. Once there are standards, organisations can be held to account for delivering them 8/​

We need CHC funding to extend to 24hour care for severely affected patients with ME. We need to create bespoke training for people caring for patients with severe ME. Technology could be used to support patients who are bedbound to monitor/communicate with their oversight team 9/​

We need to train a new generation of doctors to become ME specialists. Eventually aiming to have a specialist oversight and treatment team in each region 10/​

As all of this unfolds, we set up a national registry and start collecting data from across the country. This lends itself to real world treatment trials and fast-tracking translational bench to bedside’ research and giving patients access to drugs which might help them 11/​

I do hope Wes Streeting will meet with the #There4ME team. We need to political will and support to make this happen. A MASSIVE thanks to everyone who has supported the campaign so far and to @KarenLHargrave @GoreLloyd and @oonagh_cousins for their tireless work. END/
​

Thread on the 2021 Fluge, Mella pathomechanisms paper she cites: https://www.s4me.info/threads/patho...drome-me-cfs-2021-fluge-mella-tronstad.21485/

Edit: this is also being discussed in the Maeve Inquest thread: https://www.s4me.info/threads/maeve...e-death-and-inquest.31707/page-86#post-556308

 

Latest update from the campaign:
https://www.thereforme.uk/p/campaign-update-8-the-media-is-asking

 

Update: “The preventable death of Maeve Boothby O’Neill A lament for Maeve from a friend who loved her”:
https://www.thereforme.uk/p/the-preventable-death-of-maeve-boothby

(Also being discussed on the thread about Maeve’s inquest: https://www.s4me.info/threads/maeve...e-death-and-inquest.31707/page-94#post-559347)

 

"Campaign Update #9: Scrutiny matters: Miranda, Monbiot and MPs":

https://www.thereforme.uk/p/campaign-update-9-scrutiny-matters

 

#ThereForME have posted a letter to Layla Moran MP (chair of the H&SC Select Committee) asking for an inquiry into treatment of ME and LC patients.

https://twitter.com/user/status/1850824693407686816


https://www.thereforme.uk/p/thereforme-letter-to-the-health-and

Sorry if this isn't the right post to share this on.

 

I'm genuinely curious about the process that these letters are going through, in a positive way. Maybe @Karen Hargrave could enlighten.

How much input do the signatories have to the letters that are being written? Particularly curious how much input the very well funded (in relative terms) UK ME charities have into them. The approach, determination and reach 'seems' much larger than they have managed to achieve on their own (or have been willing to try), so, how collaborative is it all?

Obvs, appreciate it may not be possible to comment..

ETA: I'm really liking the approach that #ThereForME are taking and the reach they are achieving, seemingly not being held back by historic timidity or other politics.

 

Thanks for posting this. I’ve a few things going round in my mind having read Chris Ponting’s useful posts that seem a direction forward as an ask and thinking about the issue of inquiries and getting the right and whether they can ‘put off’ emergency changes etc that might be needed for the situation re: unsafe care particularly fir the more severe. Even if they are an important aspect somewhere down the line

but don’t know either which would be the right thread or what to call it etc (something like the big picture of jigsaw pieces and the catches they all come with)

 

Who is Science for ME listed as signatory?

 

Good to see that S4ME is a signatory. Thanks to Karen and the team for organising this and coordinating this with so may organisations.

With the support of the countess of Marr I submitted a proposal for a inquiry by the health select committee via my MP several years ago. I can’t remember the numbers but the ratio of inquiries to proposals is exceedingly low so the odds are always stacked against but this probably has as good a chance as any due to the chair’s interest in LC and the level of support.

When I submitted my proposal Sarah Wollaston was chair. It was only later that I discovered she was friends with SW. In retrospect, I think it was probably the wrong time for an inquiry anyway. Whether or not now is the right time I’m not sure. I can see positives and negatives.

 

There's nothing SW loves more than a public platform from which to recruit people to his ideologies.

 

Oh I wasn’t sure if it was the same because the web address is S4ME! It’s good we were included (and there isn’t an imposter group with a similar name, which is what worried me)

ETA that’s why we have a committee!

 

Something I genuinely do not understand is the reference to "[c]urrent gaps in care for ME and Long COVID, and their connections to historic approaches to infection-associated chronic conditions". I don't really know what other "infection-associated chronic conditions" are implied other than ME/CFS. No-one is criticising gaps in care for, say, Guillain-Barré syndrome or reactive arthritis (that I know of!) The only other thing I can think of is "chronic Lyme" which is probably mostly ME.

 

Karen Hargrave has posted on Twitter asking people (patients, carers, friends, rellies) to contact their MPs to ask for an inquiry, if they live in these constituencies:



https://twitter.com/user/status/1850825279096180750