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

in the hierarchy of needs, there are access to things that help people survive needed first. medical care that might make 5% difference which is a big thing in what you can and can't do, medical care so you know that you aren't disappearing and information will be accurate on the condition and research will be possible as per other illnesses, care, finances, making sure they don't end up in a hospital or care home that tries to mobilise and rehab them etc. so strong advocates (which comes from healthcare as per normal which has a physician who takes responsibility for the lifetime care, not an offer of a 6 week course).

Then if these things were needed they are in fact not just lower down that order, with regards how psychology works as well - sort the situation so things are less desperate, rather than leave it desperate and treat the desperation as if it is anxiety, and then be very careful indeed to diagnose and match well to the type of support needed to ensure it is safe.

even if these were delivered by people who weren't delivering the opposite to what isn't harmful (which most aren't ... and we have physios thinking they can deliver psych, which I find apalling) then these things are available elsewhere with physiosforme actually being better positioned to advice the individual clinicians of how to adjust carefully, and as for counselling .. well it needs to find those who haven't reframed themselves to misunderstand the condition, so is way off and needs a big old safe list with those who have found themselves wedded to delusion on a warning list for pwme, in particular anyone severe.

 

because it is a political compromise based on half the committee needing to come from those with vested interests in the old model.

 

This reminds me of something I wrote in the a few years ago in the NICE Guideline thread:

I know Caroline Kingdon, as she has visited me several time to collect sample for the Biobank. I strongly agree that specialist nurses with her type knowledge, understanding and experience would be better, and less expensive, than teams of therapists.

Whether or not there is any new funding (and I sincerely hope there will be), my hope is that the current ME/CFS services will replaced by physician-led services with specialist nurses which are connected to research institutions. Sadly, I feel increasingly pessimistic about that happening.

 

Nurses cost more, so I doubt it.

 

Yes, the NICE guidelines wording will have been carefully argued and presumably the paragraph "services may include:" followed by a whole list of optional HCPs was the most that could be agreed with 50% of the committee coming from a biopsychosocial /status quo defending position.

So repeatedly, we're getting this unwanted and unwarranted compromise, whereby people with unhelpful views about this illness are invited to be at the table & say things contrary to what patient themselves know & say and then what's delivered Is a diluted compromise not in interest of patients. This then leads to more years of waste, lack of proper progress harm and endless discussions and whataboutery regarding how to get what we really need

 

Can I anon quote this as a good example of Service Users views please?

 

This is the message that LCA (Long Covid Advocacy) are promoting:

'Over 2 million people are suffering from Long Covid, facing debilitating symptoms that rob them of their health and quality of life. The economic impact is staggering. We must urgently fund research to uncover its cause, find biomarkers and develop effective drug treatments—lives depend on it.'

You may want to amend it to include or concentrate on pwME.

Their info also emphasises this:
"One thing we don’t do is forget people with ME (which would be a bit daft as about 50% of Long Covid is ME and about 89% of us have PESE). So, they are included in our campaign, as there is a significant crossover of the need for effective clinical pathways and research funding."

I think that any push for funding needs to concentrate on biomedical research at this stage, as we have no idea what is in the final plan.

More LCA info: https://www.longcovidadvoc.com/post...ss-month?utm_source=substack&utm_medium=email

There is info re postcard and social media campaigns on the above. The emphasis is on -

Collectively send postcards to 1 or more of the 3 big cheeses for Long Covid Awareness month:

1. Ashley Dalton MP - Parliamentary Under-Secretary of State for Public Health and Prevention
   
   
2. Sir Stephen Powis - National Medical Director of NHS England
   
   
3. Prof Lucy Chappell - CEO of the NIHR and Chief Scientific Officer of the DHSC
   

Focusing on what we call the Golden Three, funding for:

1. Biomarkers
   
   
2. Pathophysiology (biological causes)
   
   
3. Effective drug treatments
   

 

This is very inaccurate. LC is usually defined as any symptoms due to covid infection that persists for more than 3 months. Some estimates puts the global prevalence as 400 million. There are nowhere near 200 million new ME/CFS-cases post-2019, and certainly not 360 million with PEM.

The studies they are quoting are not suitable to estimate prevalence of any kind. Edit: the site doesn’t even have any sources for their claim. Even worse..

 

Ditto about not reading recent comments.
What I did do today was write to my new MP with the date of the next APPG meeting ( 5th March, a week tomorrow). He had replied to my earlier letter with a commitment to join the APPG but was not on the list of attendees.

I requested again that he attend and also drew attention to the delivery plan. I don't know if it's on the agenda ( does anyone know?) but considered that he should know about it so enclosed a link to the #thereforME campaign. It's too long for briefing an MP hence I will be interested in replies to @NelliePledge's post, but it was the best I could do today.

Feeling miffed that I've been through this once carefully with a different MP but despite not moving, boundary changes have put me in a different constituency and I need to start again- but no energy.

edit: from MEAssociation
APPG update:

The next All-Party Parliamentary Group on ME meeting will be held on Wednesday 05 March, 5 – 7pm.

Invitations have been sent to all existing members of the APPG but if your MP isn't already a member, you can contact them and encourage them to attend the March meeting or join the APPG as a member.

A template and guide for inviting your local MP can be found on the APPG's website:
appgme.co.uk/contact-your-mp

The meeting will focus on the Department of Health and Social Care's upcoming Delivery Plan, and on the APPG's priorities and key activities for the year ahead.

 

Tbf there is actually a published draft government plan in the form if the "Interim Delivery Plan" that was consulted upon. It's weak and the consultation responses report emphasised a strong call both for more research and healthcare support especially for the severe.

The next step is by it's nature opaque as its the government’s plan, their different departments each have to budget to deliver bits of it, all under considerable cost pressure from the treasury as we know from the news.

Still the most likely scenario is we get exactly what we have seen already with no amends. I'd be willing to bet that's what they aimed and expected to do but then got a far larger consultation response than they anticipated, and the Coroners report has landed.

Now they are belatedly realising that there's genuinely a problem and a much bigger one than they realised. So simply doing that is politically awkward as it means they ignore the consensus areas in the consultation responses they got back and the coroner report. To address those adequately funds are needed, and a sizeable though not mountainous but sustained change in research and health care investment is needed.

I'm sure charities will be advocating for what they believe is needed, not necessarily what nice officially says.

Without public pressure on granting funding like this campaign, there is zero chance of improvement for at least the next decade, quite possibly generations.

I can't wait that long.

There is support that could help me now even with nice and the research base being what it is currently.

In the (still very unlikely) scenario we get a little funding, the nominated patient reps will then have the discussions with government about optimal spend, why BACME / clinics under MH etc are wholly inappropriate, as is a complete absence of any service. Good template specifications for clinics do exist.

Patient groups are putting pressure on the nature of the clinics in response to the not at all transparent NHS stocktake, which will be reinforcing the realisation that they screwed up and there is a black hole where there should be a fit for purpose commissioned service.

Hopefully the appg will ask more questions about the nhs England stocktake to try to get greater transparency. I totally agree we need visibility of their thinking.

 

But are they?
What I see is pressure to expand the same old model of 'multidisciplinary care in the community'.

 

Agreed. People need to be careful that they aren’t actually signing off ‘the type’ of offering whilst they think they are negotiating or campaigning for some tweak or funding or just being polite because they’ve been conned by eg BACME s manipulation that if you don’t engage you are bad but if you do engage and are at all critical they threaten to use it to blacken you in order to force them to basically useful idiot for them and say nice things (under some delusion they will change anything in return). Which is of course just another convoluted form of coercion to force people who shouldn’t be saying anything like that ‘in the name of’ into signing of stuff no one wants based on them appealing to egos that ‘maybe for them’ they will do something in return if they do

that second part never seems to come (what they claim they do want) and their words they claim to say just to oil the wheels end up being used - or maybe all these people really do just want more of the same with a shiny new brand and words to slander us with like ‘us being dysregulated’ as a new bigotry that (bps think) can get away with spreading

people who are doing anything on this need to take a step back and think if they are doing it saying anything then is it genuinely what they want or think is right - or are they saying that because they think pretending such means they get something else more important in return etc

when do we ever get people just saying ‘we need like everyone else a medic + nurse and if additional staff for research then boomed scientists who are keeping track of everyone ie long term responsibility’ and junk this nonsense- I’m not convinced most group sessions or. Other silly courses are making pacing more possible it’s just a facade about shifting responsibility for being ill onto patient instead of there being no cure - people have a right to do these small things without getting ill for weeks or permanent deterioration and it be taken seriously, not just gif g if s all to be told that nonsense our behave ourselves from mostly people who don’t understand and I’m sorry if they can’t sign off adjustments letters and medical letters then they aren’t making pacing possible it is just a lecture of behaviourism

 

with with no funding, it can't be anything other than dreadful. the lives of m.e have been too wasted for them to keep taking time for reports that exclude patients and then fail in some way. It was never justified for the MRC / UKRI which, lets remember for long covid, went straight in with two funding calls to set up a research portfolio and clinical trials, to put everything on pause for m.e , when they have been meeting with our charities several times a year since 2007 and acting as if they needed further meetings to work out how to stimulate the field


. Re. The 2002 chief medical officers report report , CBT/ get was still In it’s hay day and influence powerful until about 2011 - Even the m.e APPG nhs report of 2010 was I think citing Esther Crawley as A key witness and get and CBT as the most evidence based treatments. But it still was better in some ways than the NICE guidelines & what looks to be in the DHSC delivery plan. The Gibson Report of 2006 made the point that there had been no consensus at all that m.e , even from people they'd interviewed on a behavioural angle, was a purely behavioural condition and therefore why was all the funding going exclusively to that and the same could be said of services. Certainly regarding severe me, there was never evidence at all for behaviour treatment as sole intervention or even as fairly effective intervention and there was no ethical support for just abandoning severe m,e to untrained, disinterested and powerless GP's , which is what happened

I'm not able to read documents cover to cover but I’ve skimmed the CMo report, I think it was blighted the sensible recommendations for severe me being put under the heading of "patient recommendations" (and who listens to those) and the general recommendations at the end were less good /specific regarding severe m.e. This might reflect all that could be agreed on because the psychiatrists were still influential and some of them walked out because they felt that it was too biomedical.

Also my understanding of the CM0 report was that in it, the referral services were supposed to be, like most secondary care, for those with more severe and complex needs , whereas NHS turned it turned them into cheap, minimal services which excluded severe me and became abc fatigue management

[/QUOTE]General Practitioners should usually be able to manage most cases in the community setting, but must be able to refer patients for specialist opinion and advice where appropriate (e.g. because of complexity in diagnosis and treatment)…..
…
Sufficient tertiary level specialists in CFS/ME should be available to advise and support colleagues in primary and secondary care.

Health service planning
Service networks should be established to support patients in the primary care and community setting, to access when necessary the skills, experience, and resources of secondary and tertiary centres, incorporating the principles of stepped care. ….
……..
• Health service commissioning through primary care organisations, supported by health authorities or wider consortia, must ensure that local provision for these patients is explicitly planned and properly resourced, and that health professionals are aware of the structure and locale of provision. Health commissioners should be requested to take immediate steps to identify the current level of service provision for CFS/ME patients within their locality.
• Each Strategic Health Authority should make provision for secondary and tertiary care for people with CFS/ME, based on an estimated annual prevalence rate of approximately 4,000 cases per million population in the absence of more refined data.
• People who are so severely affected that their disability renders them housebound or bed-bound have particular constraints in regard to their access to care.
These specific needs must be met through appropriate domiciliary services.[/QUOTE]

 

The two specs I am aware of both entail medical staffing and are not the OT led services in current practice.

Without going into further detail I have had sight of extensive thoroughly researched material detailing the case against the current situation that is being submitted to government.

If we do end up with the same old, it won't be for lack of lobbying by patients and patient groups for a more appropriate service design.

 

Agree, but it also may be in part due to patient groups lobbying without fully understanding what they are asking for or why. The MEA has persistently supported the idea of multidisciplinary teams and has funded PROMS for rehab use. AfME have complained that patients are 'too negative' about current services and themselves seem to offer some pretty strange support options. ThereForME is supporting 'community based care' which will not involve specialist physicians. And so on.

I don't see practical way to get a sensible service at present because the great majority of physicians do not understand the problem. But asking for funding for the wrong thing seems to me to be certain to make things even more difficult in the long term.

 

I am conflicted, on the one hand @Jonathan Edwards Edwards has very sensible points.

On the other hand I wonder if this is one of the rare opportunities to get attention for ME with the parlement and therefore this is the time and opportunity to request funding.

I also sense that #thereforME is a lot more apt in lobbying MP’s and getting across what our issues and needs are.

 

I do totally understand people's concerns the past being what it is but none of the materials and initiatives I have seen and am aware of were produced by those charities and they are garnering x-charity support.

I'd like MEA and AfME to be more ambitious than they have been publically, but in fairness the individual projects / gaffes you reference are not necessarily indicative of those charities negotiating positions behind the scenes .

We're never going to have complete unity with our varied respective individual views, the ME community is a broad church, but I think the direction of travel is a positive one and the more we pull together the better the outcome will be.