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

Believe me, Karen, some of us have been scratching our heads about this for a while. Perhaps of note, the other international experts on the MRC board I sat on had even less to suggest than I had. There are no leads. No leads. all the stuff out there is so far speculative and unconvincing. I don't say this to be difficult. I say it to be honest, because there is nothing I would like more than to have spent the last few years of my biomedical life helping just a tiny bit to get ME/CFS research on the right track.

 

So you might end up promoting bad science ideas to the media, community and parliamentarians? Sorry but I think that’s the opposite of “perfect is the enemy of good” * we can’t move for “good”, everyone everywhere is doing “their” best. The possibilities are endless.

That’s why me, not even a scientist, not even a GCSE in biology, has ended up at S4ME and then also reading up on GCSE biochemistry. Because there’s always new research being circulated in the Me community, by the charities, OMF etc. But a lot of it isn’t very helpful.

eta *killing us with kindness is what I wanted to say.

 

Hopefully not if we get some good contributors! Anyway, option is there if there's interest - no pressure.

 

It's absolutely right that a lot of the COVID-related money has been wasted, some of it proving things we knew a very long time ago.

For the little it's worth I agree with Jonathan. There are a few curiosities (TGFβ, the complement protein etc results from the recent preprint) but nothing I see that immediately suggests a large-scale research investment. I'm sure many of us could throw out ideas - maybe functional neuroimaging looking at the PEM state & perhaps in a few years time if there are improvements in upright MRI scanning they could be used to look at cerebral blood flow under orthostatic challenge - but if I had a large pool of money to spend solely on biomedical research I too would hold off until we saw results from DecodeME because the best use of such a fund that I can envisage at this time would be to spool up research into any possible new leads it generated. We really don't have anything at present.

Something I would spend money on is high-quality epidemiological research. There's a dearth of it.

Binkie: Can confirm that - I was told he was retiring in December.

 

I think it would be better if you had a scientific advisor, because if you promote something with more holes than Swiss cheese, it will undermine you. which would be a shame because your reach and messaging has been really good so far.
You referenced that the £50m thrown at Long Covid wasn’t the best use of money, have you analysed how those monies were allocated? Were there flaws in the commissioning, if so, where?
I’m still wondering:- if the question/issue is “how do we avoid potential future money being wasted on unhelpful research?” why is the answer “open submissions, to an advocacy substack, on how to spend £100m over 5 years on ME/LC, where the only scientific scrutiny is from online followers who aren’t necessarily knowledgable in that area”.

I’m sorry to harsh on you, I just find it all a bit illogical/woolly that you would use your energy and platform in such a way when you’re making really good headway with other clear messaging.

 

It strikes me that what people with ME/CFS most desperately need is basic services.

One idea that has come up is ME-trained nurses, who could be very helpful to severely affected people. Some of them have little or no access to NHS services (including routine preventative screenings) because they're unable to leave the house.

The next problem: even if the funding for a nursing specialism were there, who would train them? Who would oversee their placements? Most of the ME/CFS clinics aren't even led by doctors, let alone consultants, and offer neither treatment nor follow-up.

It's difficult to know where to start when there's just a gaping hole where our healthcare ought to be, but it might be the area where a campaign could make the most progress. Health professionals trained in delivering Nice-compliant care could potentially make more difference to pwME than big research projects, at least until we've got something to research.

 

Even a public awareness campaign of how varied ME is and how changeable. When I was mild, someone really had a go at me for “joking” about a serious illness - their school friend was bedbound with ME so they thought that’s what it was. They didn’t realise you could be mild and have a job.
I now also get accused of outright lying that I can’t do x/y/ because if I can’t do that how can I do a/b/c plus the ubiquitous “you went out the other day”.

 

But Karen, you already have a piece that says:

"Research in recent years, including our own, indicates clearly that persistent viral elements cause inflammation of the lining of blood vessels, which underlies many of the symptoms.1 This inflammation can lead to the production of microclots that block capillaries and can result in fatigue and other effects."

Which is simply untrue, and is likely both to unnecessarily terrify people who have been told they have ME and to encourage them to undergo treatments of no known benefit but well known risks of harm. This is disinformation in its purest and most toxic form, to my mind.

The work on amyloid deposits from blood samples may contain some useful clues as to what is happening in ME/CFS but no scientist has the right to write stuff like this for patients as if it was reliable information. Research indicates none of these things.

 

This is an interesting thought. If we have no means to get a single physician to take a sensible view of ME/CFS maybe at least we could get some nurses to do so - and there is one who immediately comes to mind, Caroline Kingdon.

Is there a 'Nurses for ME' group? We have Physios for ME who bring sense to the physio aspect but that is actually a rather marginal role in actual care. We have BACME, which remains dominated by people who still cannot see ( and likely never will) how baseless their approach has been. Would it be possible to create a nurse organisation that spread out across the country so that everywhere (or at least lots of places) there was someone sensible who could advise others on simple things like light and sound reduction in hospital?

With Teams and Zoom it is now possible to do a lot in terms of education and interaction without people having to travel.

I wonder how exactly the Macmillan nurse system came about? Probably a big legacy to start with. Not easy to replicate!

Does anyone know of a nurse group?

 

Wholeheartedly agree. Research could become an easy decision if DecodeME shows us where to look. So maybe some preparation for that, get mechanisms in place to move.

But for now it’s institutional change in the NHS. Which is very hard to do but could have significant benefit and will be needed for years no matter the outcomes of research. This fits the government’s reform before money message. More importantly the basics are what many of us need.

 

Not sure how active it is, if it still exists, but it was discussed here, Nurses for ME

 

It looks as if it went down a black hole around 2021.
I don't see anyone heading anything up with enthusiasm.

 

On biomedical research:
Just wonder if it might be worth identifying areas that have shown inconclusive results (eg microbiome, gut and oral) but that were conducted using Fukuda definition participants rather than a stricter criteria, and possibly repeating some of them (as a means of elimination of potential lines of inquiry if nothing else).(?)

 

Apparently the charity was built from the ground up by an individual. But you couldn't replicate it for ME, it hasn't got the fundraising potential.

Presumably the NHS knows the importance of specialist nurses, though, otherwise there wouldn't be so many of them. Much of the care a former colleague receives is through MS nurses, and that includes them being the wiring that connects the different parts of the service—they liaise with the consultant, the wheelchair service, the OT team, the GP surgery, etc. It's often the same nurse making the visits, so they don't have to waste most of the time they have with patients trying to catch up with current the state of play. It's a crucial role, and one that should be in place for severely ill pwME.

If p/w severe ME existed, of course, and as far as the NHS is concerned, most of them probably don't. It's a bit like all the wheelchair users who suddenly started visiting shops and cafes in town when they adapted the buses and built an accessible tram service. People had thought all the accessibility crap was a waste of money because they never saw any disabled people.

 

Yes there are absolutely studies that could do with replication attempts for this and other reasons. I think this would be a good use of hypothetical funding.

I agree that DecodeME and Precision Life will hopefully point the way, but perhaps we should consider what the best course of action is if there are not clear results from those quarters.

Also, as I have said before, in my opinion any drug with a reliable positive signal from a placebo controlled phase 2 long covid fatigue study should have an ME trial. But obviously that hasn't happened yet and those trials are shooting in the dark.

 

I really like the idea of a "Nurses for ME". If I remember correctly there are now some nurses in the LC space so perhaps it's the right time for such a group to be (re-)constituted. There's a brief history of Macmillan nurses here and some details of how they are funded in this document.

There are some areas of inadequate provision where it might be easier to achieve results even absent a fundamental restructure of clinical services. Random example: NHS wheelchair services often won't provide help to pwME; some of them say that if you can walk a very short distance from one room to another that they will not provide a wheelchair even when it is absolutely necessary for outdoor use. Others will only provide bulky wheelchairs or those that cannot be self-propelled and I know of no-one who has a suitable electric wheelchair on the NHS. Things like that can make a real practical difference to our lives and might be considered valid campaign objectives.

 

For what it is worth, existing discussion threads on;

What research do you want to see? (study ideas)

Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al

 

When considering nurses, be aware that one of the main dangers to youngsters with ME is a nurse consultant who ran the CFS service at GOSH (Great Ormond St), which moved on to UCLH. It is now part of TRACCS

Oh look, they're running a training day on 8 Nov

"Getting on TRACC: Working with young people with complex body and mind health needs
The Treatment and Rehabilitation of Adolescents and Children with Complex Conditions service (TRACCS) at UCLH are hosting an in person one day conference to share, inform and work together in the specialist area of complex body and mind health needs. This conference is for all professionals working with young people with persistent and challenging symptoms.

Fri 08 Nov 2024

The Treatment and Rehabilitation of Adolescents and Children with Complex Conditions service (TRACCS) at UCLH are hosting an in person one day conference to share, inform and work together with clinicians in the specialist area of complex body and mind health needs in Adolescent medicine.

What will be your learning outcomes?

• Increasing knowledge and awareness of working with young people and families with complex physical and mental health needs such as Functional Neurological disorder, ME/CFS and similar conditions
• Space to share experiences of starting well and engaging young people and their carers/families
• Provide an opportunity for networking
• To provide an opportunity to share learning from young people and their families/carers living with complex health needs


TOPICS & WORKSHOPS include:
• Young people's journey - including an expert patient panel
• Starting, working & ending well with young people and their carers/families
• Diagnostic dilemmas
• Therapeutic working
• Impact of neurodiversity on health conditions
• Role of specialist teams and collaborative working
• Spotlight sessions on Adolescent Medicine within specialties eg Rheumatology, Neuro-gastroenterology and Social Care."

• Tutor: Monica Samuel and Anna Gregorowski
• 
  
• 
  
• (Clinical Specialist Physiotherapist
  
  Monica Samuel
  
  monica.samuel@nhs.net
  
  07977094335
  

https://www.uclhcharitycourses.com/...eople-with-complex-body-and-mind-health-needs

 

Job advertised on the 19 June 2024

Note the Job Summary refers to 'ME/Chronic Fatigue'



'For questions about the job, contact:
Clinical Specialist Physiotherapist

Monica Samuel'



https://beta.jobs.nhs.uk/candidate/jobadvert/C9309-24-0912


Senior Physiotherapist– Adolescent Therapies
University College London Hospitals NHS Foundation Trust

Information:
This job is now closed


Job summary


Are you looking for a new challenge? Are you interested in service development? Would you like to work for an organisation committed to providing high quality tertiary level care? Then you could be the person for us.

An opportunity has arisen for a Senior Physiotherapist with a special interest in Adolescent Rehabilitation to join the highly experienced Treatment and Rehabilitation for Adolescent and Complex Conditions Service (TRACCS) The post holder will be responsible for providing a high level physiotherapy service to TRACCS patients, typically for conditions such as ME/Chronic Fatigue, Post Covid Syndrome and Functional Disorders in an inpatient, day care, and outpatient setting. Alongside this there will be a responsibility to provide a service to the much smaller percentage of acute inpatients.

The post will involve highly collaborative working with the Multi-Disciplinary Team (MDT) and effective liaison across health, social care and education sectors ensuring the delivery of a consistent approach. The successful candidate will be expected to carry a specialist caseload, carrying out highly specialised assessment and treatment.



Main duties of the job


The post-holder will be one of seven therapists integrated into the Paediatric and Adolescent Division within UCLH NHS Trust and will be supported by the Clinical Specialist Physiotherapist and Therapy Service Lead.

The successful candidate will be a dynamic and motivated Physiotherapist who can provide effective therapy input in a creative, thoughtful and reflective manner, demonstrating leadership qualities, high level communication skills and a cooperative approach when working in this challenging field.

Applicants will need experience providing rehabilitation to patients with complex long-term physical needs. They will need advanced clinical reasoning skills in the rehabilitation of patients with chronic conditions and complex needs and a keen interest in working with adolescents (experience desirable but not essential)......


.