A thread on what people with ME/CFS need in the way of service

Kitty said:
The reality is that a lot of public money is being wasted on salaries for people offering nothing, and the only reason for that is politics. At best it's the "We have to be seen to be doing something" type, and at worst it's the "We have to reduce benefits bill" type.

Ironically, doing nothing at all would probably have saved more on the benefits bill, since 'therapists' would not have been given licence to push so many people into severe illness.
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Yes I would probably have found flexible work eventually and not needed UC anymore if I had not been psychologically messed about with by doctors until i ended up severe. Now I recieve the highest form of PIP. This is pretty common thing with pwME.
 
Robert 1973 said:
Who decides if the idea is good? The same people who have decided not to fund SequenceME?
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Agreed this is the thing that really worries me.

We are dealing with a situation in which the most promising drug trial in MECFS history could not find 2.2 million quid worth of funding from government or pharma.

Nothing indicates the UK situation is any better
 
I’ve been through the key structural elements part of the document and I think it’s good, thank you @Jonathan Edwards it certainly could describe what we want. It could though describe something less than what we want.

Some specifics.I want to be able to regularly and reliably get vaccinations, blood tests, general monitoring, dental check ups and treatment, etc at home, in a safe and understanding way by people who I know, who know ME/CFS, who I trust and who show flexibility. People who can break things up into small manageable visits, listen to and respect my needs, reschedule if I’m bad. It’s simple stuff but currently absent.

If I need emergency or any other hospital treatment I want to know the hospital recognises the needs of me and people with severe ME/CFS more widely. That they will at least attempt and make the efforts they can to not make me worse. I know it’s not entirely within their hands but the situation right now is no effort, consideration or protocol exists at all.

It seems like a low bar, but right now none of this is possible. The NHS is not safe for people with severe ME/CFS, this should not be in doubt by now but seems to be. The level of dismissal and patronising we get is off the charts. People play referral ping pong and treat us as if it’s fine to push us beyond what pur limits are because they are not real. So that’s what we need to address as the foundation of service delivery IMHO and it may need to be clearer in the request I think.

I’d like these teams to become responsible and accountable for us in a way nobody currently is. Not to us. But for us. There is a feedback loop and an in incentive then for them and the service to improve. It’s not about us improving at the point, it’s about the NHS improving.

I guess there’s a risk it could be rolled into ‘community’ but as described we could end up with something very arms length and all the above left to current community teams who fail to deliver for us anyway.

I agree with the off label line. These teams should not be there to provide off label treatment with no evidence base. But many of us are already on things so they shouldn’t take us off them either.

But these should or could also be the basis of what will be needed to move the field forward. Not everywhere but we will need teams working with researchers. So then maybe layer on how these same people can do the investigation, work with research hubs/universities, be the internal hospital me/cfs experts and evangelists (probably the wrong word for the NHS but it’s used in other industries) and build the knowledge base needed to deliver trials and treatments?

There would be as much if not more listening and learning as delivering anything or teaching patients things to start. The teaching would be to other healthcare professionals in their hospital and communities and so teaching hospitals would be ideal locations I think. I see great hope for medical students to see and learn about us given the chance.

So many of us have been broken by what we’ve been put through. All of it avoidable if people listened and took this, took us seriously. So I really hope someone is starting to.
 
I suppose our strongest argument for a service might be the oldest one: it needn't cost any more, you could just use the existing money better.

For a start, GPs could be diagnosing ME/CFS. They used to do it, there's no evidence they were any worse at it than the so-called specialists, and there are no ongoing costs in returning it to them.

We have to get GPs involved in a positive way, as they'll be the gatekeepers when we do have a specialist service. Perhaps if we make it clear that we're not expecting them to work miracles—we know there's no treatment, and we're not asking for anything more than the same basic healthcare as their other patients.
 
Utsikt said:
Do GPs diagnose MS or RA in the UK?
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No, they refer to a consultant with suspicion of X, Y, or Z.

But there are no ME/CFS consultants, so GPs used to diagnose it. There's no reason they shouldn't carry on until we do have ME/CFS consultants—for a start, they're far better placed to spot potential differential diagnoses than the therapist brigade.

Also, they can refer to a consultant for exclusion of a suspected alternative. Over a few years, mine referred me to the hospital to rule out MS, plus a movement disorder that might explain my odd gait. I wouldn't have got that via a BACME-type clinic.
 
PS: I know it sounds a bit perverse to argue for GP diagnosis in the interim. But the problem is that people with ME/CFS get shunted out of mainstream healthcare, into these special hived-off areas where there's no danger of them bothering a doctor.

That needs to be changed, and however unsatisfactory it might be, it probably has to start with GPs taking responsibility for us. For anyone who develops a serious disabling illness, they're the 'front door' of the NHS. And at the moment they're shoving people with ME/CFS out of the fire exit, into the corner of the car park where they keep the bins.
 
We also need to be wary of current ME/CFS consultants in some places doing the diagnosis while holding on to antiquated views about treatment. I was horrified to discover from patient feedback on the MEA website about my local clinic consultant who tells people he supports PACE and believes in CBT/GET. New patients go on to the OT run BACME short course. Everyone else doesn't even get to see the consultant and we're left with nothing.

There's no way that consultant will be doing annual reviews or running a team of specialist nurses.
 
V.R.T. said:
Agreed this is the thing that really worries me.

We are dealing with a situation in which the most promising drug trial in MECFS history could not find 2.2 million quid worth of funding from government or pharma.

Nothing indicates the UK situation is any better
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and there is this
B

Thread 'Draft rare cancers law offers hope to those with incurable brain tumours'

www.the-independent.com

Draft rare cancers law offers hope to those with incurable brain tumours

Abi Feltham was diagnosed with a brain tumour in May 2024 and was told she has 15 years to live.
www.the-independent.com www.the-independent.com

This news item came up on social media

And it's interesting and struck me that it is a useful one to flag on some thread that is talking about severe, very severe and maybe research as I find it interesting the approach it is taking regarding database to link up patients with...

Where it talks about having one lead for research for these , worth looking at the specific wording of that as it’s more precise than I’ve put
 
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