Kitty
Senior Member (Voting Rights)
My concern would be who would train them.
Looking at it from their point of view, the most logical course would be to turn to the people who're considered the experts: BACME.
United Kingdom: ME Association governance issues
- Thread starter JohnTheJack
- Start date
Looking at it from their point of view, the most logical course would be to turn to the people who're considered the experts: BACME.
BrightCandle
Senior Member (Voting Rights)
Which is precisely what MEA and government is doing, turning to BACME and deploying specialist nurses. Which will lead to more decades of harmful exercise and CBT abuse of patients all under the new theory of the disease being autonomic dysfunction and rehab to fix it. Its a complete disaster and its going to lead to hundreds of deaths and 10s of thousands of abused patients once again funded by government and rubber stamped by the charities.
V.R.T.
Senior Member (Voting Rights)
I suppose we have to push for the right people to get involved.
This is such an appalling situation.
Kitty
Senior Member (Voting Rights)
Yep, specially for severely ill people.
I still think it's likely we'll eventually find a home in rheumatology depts. If immune modulation turns out to be a viable treatment, they have the experience of that type of drug; some have excellent nurse specialists too.
MrMagoo
Senior Member (Voting Rights)
I think that thees an issue with the different experiences people have with different disciplines. And this goes to the heart of the problem.
I’ve had terrible experiences with physios and psychiatrists, so I would probably now write them off. However if I’d been seen by, say, a Physios For ME physio I’d have a much better experience.
What we need first and foremost is “special care for ME” which is in my opinion - treating us differently than your elderly/broke my leg/MS/MND/cancer patient, necessary because of PEM, fatiguability, deterioration of ME/CFS.
Because so few professionals have the unusual needs of the ME patient at the forefront of their mind, they all default to what they know, “business as usual” aka - rehab, build up, pace up, oh you seem difficult maybe you’re actually depressed.
Conversely, if we had professionals with “doing stuff makes it worse and none of this is their fault” tattooed on the inside of their eyelids, they would be quite capable of looking after us well.
Where we become tied in knots is that the scope for healthcare professionals to default to “business as usual” is so wide, we try to bake in the “treat us well” by expelling the worst professions.
Actually we need to demand safe care which doesn’t harm us, from everyone.
I’ve had terrible experiences with physios and psychiatrists, so I would probably now write them off. However if I’d been seen by, say, a Physios For ME physio I’d have a much better experience.
What we need first and foremost is “special care for ME” which is in my opinion - treating us differently than your elderly/broke my leg/MS/MND/cancer patient, necessary because of PEM, fatiguability, deterioration of ME/CFS.
Because so few professionals have the unusual needs of the ME patient at the forefront of their mind, they all default to what they know, “business as usual” aka - rehab, build up, pace up, oh you seem difficult maybe you’re actually depressed.
Conversely, if we had professionals with “doing stuff makes it worse and none of this is their fault” tattooed on the inside of their eyelids, they would be quite capable of looking after us well.
Where we become tied in knots is that the scope for healthcare professionals to default to “business as usual” is so wide, we try to bake in the “treat us well” by expelling the worst professions.
Actually we need to demand safe care which doesn’t harm us, from everyone.
Jonathan Edwards
Senior Member (Voting Rights)
I am really arguing the opposite I guess. I think people with ME/CFS shoukd be treated exactly like people with broken legs or cancer. You don't tell someone with a broken leg to go walking, at least until you have pinned the fracture and even then you take it gently. Similarly you do not exhaust the person with MS, you let them recover as best they can first. You don't treat cancer with GET.
What is needed is just an appreciation of the reality of ME/CFS. Then appropriate care would fall naturally into place. If people keep calling for 'special care' the community will be hived off to .... BACME. The rehab approach is what is special - the special route for 'difficult patients who need a kick up the arse'. Ordinary usual medicine goes nowhere near rehab.
Utsikt
Senior Member (Voting Rights)
For most pwME/CFS, I think rehab is the standard treatment they have received. So when they are asking for special treatments, they mean something other than the standard for them, which is the exception for most diseases.
But pwME/CFS also struggle to get enough help from the «normal» services, like help at home. So «special» in that context probably means appropriate, but it’s perceived as extra.
All of this would be non-issues if we, and especially the associations, were better at being specific about what we are asking about.
Jonathan Edwards
Senior Member (Voting Rights)
Yes, but it is therefore so important not to ask for 'special' treatment. Because that is precisely what suits the government bureaucrats - cheap rehab.
Utsikt
Senior Member (Voting Rights)
We’re in agreement - don’t give them a mandate that can be hijacked.
BrightCandle
Senior Member (Voting Rights)
Given the history however I don't believe the existing doctors or institutions can offer us normal treatment. The mistreatment is deeply entrenched that now the guidance has changed they simply refuse to read it, distort everything in it and carry on mistreating patients. That system will never treat us unless this mistreatment is a a disciplinary issue and severely punished. Such prejudice has no place in the NHS, but as it standards the people who refuse to mistreat us are the ones punished.
But more problematic is none of the buildings or their procedures are suitable for ME patients at all, you can't just have us sit in a normal waiting room or put us on a normal ward, this disease requires almost every aspect is done differently. So I don't think normal medicine the way its practised will ever be able to accommodate our needs we will need special facilities because its just not possible to treat ME patients next to people with different conditions our sensory limitations make it non viable.
Just consider the most basic of problems, going to the toilet. Almost every NHS ward will have a number of bays all sharing a toilet with 4 patients at least in a bay. The toilet is far too far for most severe patients, the entire area is lit to daytime levels of brightness and there is beeping and patient noise in every direction as well as a crashing doors and sirens and overhead speakers calling for doctors. Every single part of that ward is unsuitable for a severe patient, every last part. You can't reuse or adjust it its unusable for ME patients.
But more problematic is none of the buildings or their procedures are suitable for ME patients at all, you can't just have us sit in a normal waiting room or put us on a normal ward, this disease requires almost every aspect is done differently. So I don't think normal medicine the way its practised will ever be able to accommodate our needs we will need special facilities because its just not possible to treat ME patients next to people with different conditions our sensory limitations make it non viable.
Just consider the most basic of problems, going to the toilet. Almost every NHS ward will have a number of bays all sharing a toilet with 4 patients at least in a bay. The toilet is far too far for most severe patients, the entire area is lit to daytime levels of brightness and there is beeping and patient noise in every direction as well as a crashing doors and sirens and overhead speakers calling for doctors. Every single part of that ward is unsuitable for a severe patient, every last part. You can't reuse or adjust it its unusable for ME patients.
MrMagoo
Senior Member (Voting Rights)
We are saying the same thing - we need safe care.
With a broken leg there is a op, a cast off then build up gently. With cancer there’s treatments, then build up, with MS there’s a relapse, then build up.
With us we just…are. So we now need to build up…A crash isn’t seen as a massive warning and a reaction to probably overdoing it.
The “special treatment” is not necessarily specialists, or asking for “special treatment” it’s just appropriate treatment for ME, which apparently has to be spelt out very s l o w l y for all the clever medics at the back who profess to know better.
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Sasha
Senior Member (Voting Rights)
Do you think we're getting any nearer to being assigned to a particular specialism?
Jonathan Edwards
Senior Member (Voting Rights)
There is certainly a big problem. However, there are doctors within the system who see the need for a different approach, just like Oystein Fluge in Norway. At present they are busy looking after people with lupus or rheumatoid but they would be happy to look after ME/CFS if it were not for the fact that it had been parcelled off to the BPS-minded folks.
Something has to change the perception and I suspect it has to come from the research. If daratumumab was shown to work, things would change from night to day. But it would be good to get a change sooner.
There are a few doctors already taking a medical approach, like Binita Kane, but we need them to be responsible and pushing forward with proper studies.
And on the buildings side, we have the facilities. It is just that at present they are dedicated to treatment of leukaemia and the like. At UCLH there are single rooms that can be darkened and are sound proof. Nurses come in and out quietly and either alone or in pairs if the person needs lifting etc.. I have recent experience of this because poor Jo Cambridge spends a lot of time in just such a room.
It is all simply a matter of allowing the right people and the buildings to be used as needed. I agree that this looks like an impossible task but we just need to think of a way to make it more possible. That will only happen if advocacy asks for it and not for community-run units for mild/moderate multidisciplinary special musical chairs.
Jonathan Edwards
Senior Member (Voting Rights)
But the wording is crucial in a real world.
I would say that the treatment is just rational care for someone who is in the situation someone with ME/CFS is in. If someone who has just had surgery or chemotherapy is asleep you don't wake them up unnecessarily. The same principle applies to someone who cannot bear noise with ME/CFS. Nothing 'special'. As soon as it is out of the scope of ordinary care you are down the rehab shoot.
Do you think we will see such a breakthrough in the next year? Or do we have to wait to see how the dara trials work out?
Dolphin
Senior Member (Voting Rights)
On a related point, there was this study:
Effect of physician-recommended treatment on mental health practitioners' attributions for chronic fatigue syndrome.
Renee R Taylor, Leonard A Jason, Cara L Kennedy, Fred FriedbergRehabilitation Psychology 46 (2), 165, 2001
Objective
To evaluate whether differing treatment recommendations for chronic fatigue syndrome (CFS) by physicians influence attributions about CFS among mental health practitioners.
Participants and Study Design
Ninety-three mental health practitioners (social work interns, clinical psychology trainees, licensed clinical social workers, and licensed clinical psychologists) were randomly assigned to 1 of 3 conditions. All groups read the same case study of a person diagnosed with CFS, with the only difference between groups being the type of treatment recommended by a physician. The treatment conditions included a drug trial (Ampligen) or 1 of 2 differing psychotherapy approaches, cognitive-behavior therapy with graded activity or cognitive coping skills therapy.
Main Outcome Measures
Attributions regarding the illness, including impressions about its etiology, diagnostic accuracy, severity, prognosis, and the expected outcome of the proposed treatment; familiarity with CFS.
Results
Participants in the 3 groups did not differ with respect to their prior familiarity with CFS. Participants who read the case study proposing treatment with Ampligen were more likely to report that the patient was correctly diagnosed and more likely to perceive the patient as disabled than those whose case study described cognitive-behavioral therapy with graded activity as the treatment.
Conclusions
Results of this investigation support the hypothesis that physician recommendations for CFS treatment can influence subsequent attributions about a patient's illness among mental health practitioners.
The trouble is the NICE guideline only got us halfway by banning GET of a particular sort. It then took a big step backwards by including all sorts of unevidenced activities for various therapists to use to justify their continued programs with a few tweaks - CBT, exercise programs for those who want them, care pans, goal setting. The whole BACME program is there.
Yes.
Kitty
Senior Member (Voting Rights)
And it didn't really ban it. It recommended against it, said it shouldn't be used, but these guidelines always seem to allow room for clinical discretion.