Severe difficulties with eating in ME/CFS

[MrMagoo]

If using cyclazine to tolerate feeding is necessary that’s a big old problem

 

[Jonathan Edwards]

None of this is necessary. It is all caused by delusional folk beliefs held by DOCTORS for Gods sake. Doctors and psychologists. People who are supposed to be intelligent and caring. Instead this system of starving people and torturing them is something they lobby for.

I still disagree. The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

There is a problem with starving and torturing patients but it is often assumed to be the problem in all cases without adequate evidence. What gets reported in social media is often only half the story.

 

[hotblack]

I still disagree. The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

Can you explain what it is you are disagreeing with?

Things may be more complicated than expressed on social media but I think the experience all of us have is off neglect by medics. Inexcusable neglect. There is zero reason for defence given what we all face whenever trying to access care. These cases are an extension of that.

Are you playing devil’s advocate or something else? I’m really trying to understand your position more because it confuses me at times,

 

[Jonathan Edwards]

Can you explain what it is you are disagreeing with?

No. I would need to refer to specific circumstances and that is against forum rules.

I get information through back channels from patient advocates who say 'hold your horses, things are more complicated'. I cannot pass on confidential information but what I hear makes sense.

 

[hotblack]

No. I would need to refer to specific circumstances and that is against forum rules.

Fair enough

 

[V.R.T.]

The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

The delusional beliefs here have been legitimised and amplified by every health institution imaginable. Just because the BPS narrative stems from the 'it's all in your head' bollocks that people have believed since time immemorial is no excuse.

It is as if instead of combating climate change denial or vaccine misinformation, scientists lobbied the BBC to stop mentioning climate change or telling people they should get their vaccines,throwing all their professional weight behind it.

There is no excuse for the sort of negligent and ignorant treatment that we have read about on here lately. Professionals should not be acting in such a manner. It is a case of insanity on an institutional scale.

 

[hotblack]

I agree @V.R.T.

None of this is necessary and medics could stop it, it really is that simple. We all experience different levels of this daily and some of us have experienced awful things in hospital and there’s never anything learnt, never apologies, never reflection. If our condition was accepted and people were doing their job we would have all these cases collated and the scale and pattern of the problem would be clear.

And to be honest anything else having what looks like a ‘well it’s more complicated’ argument seems like an excuse to cover up for failure rather than to confront it. I’m sure that’s nobody’s intention here but it absolutely is part of the defence used by those failing us and I think that context is important.

 

[Jonathan Edwards]

The delusional beliefs here have been legitimised and amplified by every health institution imaginable. Just because the BPS narrative stems from the 'it's all in your head' bollocks that people have believed since time immemorial is no excuse.

Nobody is disputing that.

But what I think people may miss is that those charged with looking after patients may not be BPS people at all. If there is nobody in a hospital with any commitment to ME/CFS patients are likely to end up under the care of doctors who have no idea what to do other than a sense that they need to try to keep the patient alive. They have to seek advice from whoever presents themselves as authoritative. It doesn't help that some who show up spout pseudoscientific nonsense at them. Or that others who sound more plausible follow a bPS line.

When you find yourself in a situation where you are charged with keeping someone alive and nobody can give clear advice but you know you have to do something you don't always end up doing what is best. I am just arguing that channelling anger aginst professionals who have never expected to look after ME/CFS and are caught up in the web of other people's ignorance and conceit may not be a good idea.

 

[hotblack]

When you find yourself in a situation where you are charged with keeping someone alive and nobody can give clear advice but you know you have to do something you don't always end up doing what is best. I am just arguing that channelling anger aginst professionals who have never expected to look after ME/CFS and are caught up in the web of other people's ignorance and conceit may not be a good idea

I get the point. And I absolutely agree that many of these people are not BPS. Ive said before that this is a systemic failure and that we should approach it as that because upsetting individuals egos doesn’t help bring them round. And I stand by this,

Where I differ is bringing up any other excuse than this being a complete failure of the medical teams and the NHS. There are systemic problems and those systemic problems are linked to influence from the BPS crowd and the complicity of doctors and managers and everyone else in those organisations through wilful ignorance and refusal to change.

If you disagree, please show me one instance of that change occurring, of people listening and learning and delivering consistently better clinical care for us. Becuase I’ve asked before and you’ve said there are no good examples of clinical care. And yet on the other side of the scales we have thousands of examples of poor clinical care and thousands examples of us bending over backwards to help people and organisations understand and them refusing.

You don’t get systemic change until the individuals admit there is a problem to be solved. And it is human nature to avoid admitting they are part of that, so if you give easier routes out they take them. We need to remove those easy excuses and routes out as well as giving them an easy route to change but that will need an admission of the problem. And I don’t see that happening at the level needed.

Edit: I’m at the point where the only solution seems to be to shout about the failures loudly enough until people notice because speaking softly has not worked. We have failires everywhere but they’re hidden. People give excuses. We need light on this and to bring all the examples of all the failures together so nobody can pretend its a one off or the fault of the patient or the family, but an institutional blind spot.

 

[Trish]

I haven't followed the details of any specific cases, this comment is about the general situation people with very severe ME/CFS face in the UK, particularly those unable to eat.

I have just been looking at the NICE guidelines section on severe and very severe ME/CFS.
https://www.nice.org.uk/guidance/ng...e-for-people-with-severe-or-very-severe-mecfs
It has some sensible suggestions about providing low stimulus environments and listening to the patients needs and brief guidelines on nutrition including that some need enteral feeding.

But the section also talks about referring to physio or OT to make energy management plans:

1.17.9 When agreeing energy management plans with people with severe or very severe ME/CFS (and their family or carers, as appropriate), take into account the need to make any changes in smaller and any increases (if possible) much slower.

and has a section on CBT:

1.17.13 Healthcare professionals delivering CBT to people with severe or very severe ME/CFS should adjust the process and pace of CBT to meet the person's needs. This might include shorter, less frequent sessions and longer-term goals.

I can see why hospital doctors with no experience with ME/CFS may be confused and think they have to call in therapists and get patients planning increases in activity and having psychological therapy.

Both activity planning and CBT are totally inappropriate for someone with very severe ME/CFS, especially someone in hospital in urgent need of nutritional support and in need of an environment that minimises stimulus.

 

[Jonathan Edwards]

Where I differ is bringing up any other excuse than this being a complete failure of the medical teams and the NHS.

We don't differ on that.

 

[hotblack]

Both activity planning and CBT are totally inappropriate for someone with very severe ME/CFS, especially someone in hospital in urgent need of nutritional support and in need of an environment that minimises stimulus.

I find it telling though that doctors invariably read the bit about CBT and activity planning but ignore the bit about making accommodations and providing low stimulus environments.

 

[hotblack]

We don't differ on that.

How do we change it without unequivocal recognition of the problem? No ifs, no buts, no get outs for people. I suppose I’ve become more hardline again after trying to interact with the NHS. I have an idealistic view of how things could work when I’m at arms length, then when I need them or try to work with them proactively it quickly becomes clear they are not listening.

 

[hotblack]

I think my frustration and tbh desperation comes through at times. I don’t know what else to try. Who else to ask. I’ve tried all I can think of in every way I can with lots of different people and after each failure I pick myself up and try again, but it follows the same pattern. I think most people here find that. And we’re the ones paying the price for it. And yes we’re angry and often scared. And I think that needs to be recognised.

So I think that’s where some of the pushback and responses come from. Certainly mine. At what can look like recognition of the position the perpetrators are in over recognition of the position we are in. At saying we need to understand them when many of us have spent years doing so, and yet they still show no understanding of us. At giving those responsible a get out or at any sign of not acknowledging both the normal and justifiable emotions and the reality that whatever we do or try appears to not be enough. Or of as I mentioned before, using the excuses used to cover up for failure rather than to confront it (again, I’m sure that’s nobody’s intention here but I think that context is really important).

It’s about time we saw some changes from those who are at the heart of this. Because that is the only way this is going to change, we’ve tried everything snd they’ve tried nothing. It really wouldn’t take much at sll for most of us to be grateful and work with them. But it’s them that needs to make the move not us. Them that needs to change not us. Because we’ve been opening doors for them to walk through for years and every single time they’ve refused.

I think this explains where some of my responses recently have come from. And probably those from others too. We know the world isn’t fair but we really aren’t asking for much. And yet it feels we keep on being asked for more and keep on getting nothing in return but more suffering and more cases like this.

 

[Jonathan Edwards]

How do we change it without unequivocal recognition of the problem? No ifs, no buts, no get outs for people.

There aren't any ifs and buts but it is not good tactics to upset the wrong people. The anger needs to be directed at the physiicians who should be providing an expert service and aren't. The situation on the ground is more complicated than people think.

 

[hotblack]

The situation on the ground is more complicated than people think.

It’s really not. It’s incredible simple and I find it condescending to say we don’t understand. Re-read my posts.

I have sympathy for the position staff are put in but I again ask you to show me an example of anyone learning any lessons from the countless failures. And recognising that the ‘it’s more complicated than you patients think’ is an excuse repeatedly used by perpetrators to cover up and not change their behaviour.

I’m going to leave his thread now because I think like the last time I got involved I’ve said what I think is needed and it’s another impasse of understanding.

 

[Jonathan Edwards]

It’s really not. It’s incredible simple and I find it condescending to say we don’t understand. Re-read my posts.

I am not being condescending. I am reporting what I know to be the situation. You might be very surprised to hear what it is but I am not in a position to say.

 

[MrMagoo]

Frankly, unless somebody comes along and says we have a VS patient who is actually in fact sat up in bed eating Egg and Chips every day, I’m inclined to believe the info that they are being mistreated at times.
Even if they’re not being mistreated all the time.
And if Sonya Choudhury is making statements and as reported by The Times she is concerned then I’m concerned.
I don’t doubt there’s a lot we don’t know (which is correct) but there’s clearly a problem.

 

[rvallee]

I still disagree. The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

That's a description of the problem, but it lacks the fact that those beliefs in the general public explicitly derive from the medical profession, would not even exist otherwise. The vast majority of rationalizations I see in the wild explicitly parrot back the same stuff found in medical textbooks.

Every commercial 'mind-body' program refers to those assertions to back them up, to the point where no medical professional can reasonably dismiss scams like the LP and other mind-body pseudoscience as different from the CBT mind-body stuff, because they're explicitly the same: the mind works in mysterious ways, you can work on healing yourself, or whatever.

At its core, the whole belief system can be summed up to one simple concept: placebo, and its nocive counterpart. This concept originated and is constantly promoted by medical professionals and the institutions of medicine, is not even open to being questioned, it's accepted without any limits. There is no popular version of this, the entire idea of psychosomatic processes was never considered before it became wildly popular in the profession, rather it was other vague attributions, all of which eventually got debunked. It's as direct a relationship as what a prophet is to a religion: no prophet, no religion.

Pretending otherwise removes all agency from the very people who are 100% responsible for this problem, who are professionals and are technically supposed to be accountable. And this is what we are criticizing for the most part. Back a century ago, most people believed in astrology, including scientists and academics. It was fashionable, in a very similar way as beliefs in psychosomatic models are. Something hardly anyone ever disputes in public, especially not among professionals.

Literally all of this could stop tomorrow. But that would require acknowledging the biggest failure in the history of all professions, one that is entirely intentional, in fact took great efforts to even keep alive. But that's unthinkable, so people have to keep being thrown into volcanoes, because otherwise it means that everyone who was thrown into volcanoes before was also sacrificed needlessly. We've always thrown people into volcanoes, it's just the way things are, can't do anything about that.

 

[rvallee]

It is as if instead of combating climate change denial or vaccine misinformation, scientists lobbied the BBC to stop mentioning climate change or telling people they should get their vaccines,throwing all their professional weight behind it.

Which is a thing. It has to be said, there are actual experts in those disciplines arguing those things. They just happen to be a tiny minority, and so their opinions are largely ignored, although climate change is the closest there is to a similar situation as with psychosomatics. Because, ultimately, truth is a social construct in most circumstances, a popularity contest. The widely held belief that renewable energy would never work out did not come out of the blue, it was the result of industry propaganda, very similar to how psychosomatic beliefs are promoted.

The difference with psychosomatic beliefs is that they have almost universal support among the professional class, so the fringe minority rarely gets a chance to put things in motion, like we are seeing in the US. There is a lot of attention on RFK Jr, but there are actual MDs in the mix, doing a lot of the dirty work. Their opinions might be fringe, but they have the power to not care, at least for now, and that's a very rare thing.

But with psychosomatic beliefs, it's total domination. They have no more value or accuracy than climate change or vaccine denial, but they are indisputable, to the point where I have literally never seen a medical professional dispute them as they should. Mostly because it's a career killer, unlike having similar beliefs about climate change or vaccines where it's always possible to find employment because those issues have a lot of powerful, rich interests pushing them. Hell, it's possible make a fortune pushing those beliefs. Just like the millions commercial scams like the LP do.

In our case, the powerful, rich interests are all pushing for the harmful beliefs. In fact, they are just as popular within the conspiracy fantasy communities as they are in the medical profession, which is a unique problem. Because in the end, health is political, health care is political, and medicine is political. There is nothing more political than strangers making official life and death decisions about people they will never meet or face any consequence for failing.