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

[V.R.T.]

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.

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.

 

[V.R.T.]

Who decides if the idea is good? The same people who have decided not to fund SequenceME?

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

 

[hotblack]

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.

 

[Kitty]

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]

Do GPs diagnose MS or RA in the UK?

 

[Kitty]

Do GPs diagnose MS or RA in the UK?

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.

 

[Kitty]

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.

 

[Trish]

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.

 

[bobbler]

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

and there is this

B

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

Mar 5, 2026

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

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...

• bobbler
• Replies: 1
• Forum: Other health news and research

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

 

[hotblack]

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.

I’ve done that and my experience is they want to refer you on so (kind take) you can get help and get better (less kind take) they don’t have to deal with you.

GPs seem to primarily act as referral gatekeepers. The idea of they should spend time with patients or support them directly seems not very popular.

I agree it would be good to change but I’m not sure if it should be our first ask. It certainly shouldn’t be for severe patients as no GP practice seems capable of delivering what is needed. But yes, ideally and eventually GPs will need to be part of wider delivery.

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.

Absolutely. The current service is worthless for patients. It does though provide an illusion of help. This is counterproductive but lets GPs and others say they’ve done something. I’m sure that’s part of why they still exist (along with some patient lobbying demanding people do something ofc)

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

Good point. And I suppose to argue against what I wrote above, a lot of this is going to come down to luck of the draw. If you are in an area where you have a good GP or a good consultant… or neither.

 

[hotblack]

Sorry I’m late to this and now writing a lot. But to add one clarification or thought

When I say help with non-ME/CFS things this may not be an entirely accurate representation. Because so much of what we experience is ME/CFS or related.

I mean common but perhaps not core symptoms. Not trying to actively give us other diagnoses but more looking at the issues many of us have around ENT or digestive issues, etc. which need to be checked out to ensure there’s no other issue which could or should be dealt with. Doing so within the scope of this service I think makes sense as a first point of call. Obviously if something requiring another specialist is needed they could be called on and worked with, rather than just throwing us over the fence and leaving us to fend for ourselves in the system.

The ME/CFS specialist will then see the range of problems people who are severe have and how we need to be better supported when these investigations are done. Again increasing the knowledge base, spreading to others, etc as already covered. It would be better for us who currently often cannot get things checked out so suffer in silence or things reach a point where we end up in hospital and then things go badly.

 

[bobbler]

I’ve done that and my experience is they want to refer you on so (kind take) you can get help and get better (less kind take) they don’t have to deal with you.

GPs seem to primarily act as referral gatekeepers. The idea of they should spend time with patients or support them directly seems not very popular.

I agree it would be good to change but I’m not sure if it should be our first ask. It certainly shouldn’t be for severe patients as no GP practice seems capable of delivering what is needed. But yes, ideally and eventually GPs will need to be part of wider delivery.


Absolutely. The current service is worthless for patients. It does though provide an illusion of help. This is counterproductive but lets GPs and others say they’ve done something. I’m sure that’s part of why they still exist (along with some patient lobbying demanding people do something ofc)


Good point. And I suppose to argue against what I wrote above, a lot of this is going to come down to luck of the draw. If you are in an area where you have a good GP or a good consultant… or neither.

I agree - thinking of the paper/initiative that involved Sheffield that was released i think around last summer that included Burton or Deary or both: https://www.s4me.info/threads/united-kingdom-neighbourhood-health-centres.45379/

The risk is that so that the GP you go to has somewhere to refer you then we will be ‘misheard’ as asking for either community-led rehab centres already being paraded or like the paper GP employed a few days a week explicitly to gaslight from the position of a more convincing name badge when telling people ‘it’s not serious’

I also think most services need GPs to be being given certainty and back-up on diagnoses and suggestions whether it’s medications or needing equipment or writing something

I get that @Kitty is just talking about GP being able to diagnose but there’s something in there about it being a problem - I think it’s the dumping ground issue. But then that’s what the move to fatigue and pps clinics that I think has explicitly increased since the new guidelines has been about too. To me that’s continuing and just undermining all of us as long as those continue to exist because how will those who get worse get past the gatekeepers of that - it’s so …

GP won’t be confident ‘grading’ on severity as much and home visit obligation is an issue so for more severe we’ve a problem and it needs me/cfs medical specialist

I don’t think it will be taken seriously by this habit of a system until its letters and oversight from that upper level they are used to with other illnesses. But I worry that with us how do things change so that that isn’t Pooh poohed or other games played in the system happen. How do they ensure the GP has to actually refer someone very ill etc

As long as it’s under GPs then is it rcgp stuff that mainly influences what they think of it and do. There’s also the problem of them thinking the illness just ‘goes away’ if no one came for an appointment about it in the last year etc. So records is a big issue to consider in making sure that isn’t happening

 

[Cinders66]

I’ve been thinking more about the recommendation that clinics should not prescribe off label outside of controlled trials.

I’m thinking that it might be helpful if the DHSC and the MRC were able to give some sort assurance that such trials would be funded provided the necessary thresholds are met to justify a trial.

It seems conceivable to me that some physicians with an interest in research may be deterred from offering to run an ME/CFS service if they perceive that funding for such trials may meet with resistance – as has been the case with MRC’s approach to funding ME/CFS to date.

I also think Fluge and Mella’s approach to testing drugs for ME/CFS could be highlighted as an example of how things should be done.

I disagree with making this recommendation- I don’t think it Reflects what the severe themselves, their charities or drs who work in this space do or want. My previous nhs m.e consultant the late Dr Terry Mitchell agreed to try off label meds.

 

[hotblack]

The NHS is there to provided evidenced treatments. That is it’s role. That’s it.

We absolutely need research to find treatments. But that is a separate issue and fighting to get the NHS to do something it isn’t set up for will make our job harder. Both in terms of getting the service we need and in terms of fighting against the sort of service we don’t need and people with their own un-evidenced ideas of ‘treatments’ like CBT, GET, LP, etc.

We should not be guinea pigs for whatever thing a Dr feels they like the idea of.

Having the DHSC/MRC commit to research and funding trials to get the evidence as @Robert 1973 suggests makes more sense to me.

 

[Jonathan Edwards]

We should not be guinea pigs for whatever thing a Dr feels they like the idea of.

I think this is an important point. People with severe ME/CFS are bound to want to try treatments if they are led to believe they may work. But since the off-label drugs being used do not have any valid rationale in terms of disease mechanism they must be considered as likely to benefit or harm as drugs chosen at random. In that situation the chances of harm, especially long term insidious harm, far outweigh any chance of benefit.

The fact that there are physicians out there who want to offer treatments makes no difference to this. One has to assume they do not understand the risk assessment either.

 

[Kitty]

We should not be guinea pigs for whatever thing a Dr feels they like the idea of.

100%.

They did this for years with antidepressants, which made some of us much iller and less functional than we had been without them.

 

[V.R.T.]

since the off-label drugs being used do not have any valid rationale in terms of disease mechanism

My concern is - who gets to decide when we do have a valid rationale? Is it the same bureaucratic machine that thinks the DHSC plan is appropriate and SequenceME wasn't a good investment?

It may be that something comes up in the near future that shows us some of the mechnism- surely we need to allow for clincians to do case studies in the way Fluge and Mella have?

And they chanced on a lead through their cancer treatment which was different.

 

[V.R.T.]

100%.

They did this for years with antidepressants, which made some of us much iller and less functional than we had been without them.

Is there any good studies or surveys on antidepressants in MECFS? My loved ones sometimes encorage me to try them again for my depression but I am concerned about the effect it will have on my MECFS. I had to discontinue them the times that I trialled them in the past, but didn't try nearly as many times as I was encoraged to.

 

[Jonathan Edwards]

My concern is - who gets to decide when we do have a valid rationale? Is it the same bureaucratic machine that thinks the DHSC plan is appropriate and SequenceME wasn't a good investment?

A decision is made by the MHRA, which by and large uses a sensible analysis of the level of evidence of efficacy and of harm. They are not bothered by political issues. To be paid for you also need approval by NICE, which can be slow but tends to follow automatically unless price is exceptional. You don't even need a rationale if you have the evidence of benefit.

It may be that something comes up in the near future that shows us some of the mechnism- surely we need to allow for clincians to do case studies in the way Fluge and Mella have?

Yes, and that is covered by the caveat of prescribing as part of adequately controlled studies. ANy study of this sort needs to be able to provide reliable information and a formal trial is the most obvious route. However, there are situations where pilot studies can provide reliable data but for ME/CFS that would probably require some objective outcome measure to follow linked to your rationale - which is what I used to persuade the drug company to do a formal trial of rituximab in RA using a pilot study without a. placebo arm.

 

[hotblack]

I understand people’s frustration because of problems we’ve had, particularly with research funding. But if we had a solid evidence we would have MHRA and NICE on the side of that, I have no doubt.

The politics lies elsewhere and is helped by the lack of evidence. Which is exactly why we should not be pushing to use things without evidence! We cannot have it both ways.

There were political arguments around updating the NICE guidelines for ME/CFS but those were AFAIK from outside NICE. The question people from NICE itself kept coming back to was ‘well where is the evidence’ and there being very little for anything.