The lack of recognition of ME/CFS as a biological disease in healthcare settings

[hotblack]

A large number of posts have been moved from Severe Eating Difficulties in ME/CFS.

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.

 

[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.

 

[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.

 

[Jonathan Edwards]

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.

I don't think that is true. Kids at school do not believe their friends with ME/CFS. Parents don't believe their children. Employers don't believe their workers. Because there is nothing to see. In general they have no knowledge of any biopsychosocial theories. Even when I retired as a doctor I had never heard of Wessely, Chalder, Sharpe, White and their theories.

 

[Midnattsol]

There are plenty of illnesses with «nothing to see» without patients being as disbelieved as us. You don’t have to know about prominent BPS individuals for the attitudes to have been normalised for example through media headlines.

 

[Jonathan Edwards]

You don’t have to know about prominent BPS individuals for the attitudes to have been normalised for example through media headlines.

I hadn't seen any media headlines on BPS theories then and I am not sure that there are now much. Are there? Most of the headlines I have seen over the years have been about people being terribly disabled and nobody taking notice - whether because of multiple allies or ME or Ehlers-Danlos. The BPS people themselves would never put out press releases saying it is all in the mind. Their approach has always been much more doublespeak.

The other rheumatic diseases with nothing to see share the problem of people with ME/CFS. Lupus patients often complain of not being believed.

 

[Midnattsol]

I hadn't seen any media headlines on BPS theories then and I am not sure that there are now much. Are there? Most of the headlines I have seen over the years have been about people being terribly disabled and nobody taking notice - whether because of multiple allies or ME or Ehlers-Danlos. The BPS people themselves would never put out press releases saying it is all in the mind. Their approach has always been much more doublespeak.

The other rheumatic diseases with nothing to see share the problem of people with ME/CFS. Lupus patients often complain of not being believed.

The past still influences the present. It's years ago Norwegian ME patients were attacked in the media for having pressured the Research Council of Norway into not providing funds for a BPS study at the University of Oslo, by a doctor in charge of one of the units at the university hospital associated with the study. The Council denied the accusation days later, but funnily enough it is the attack that is cited, repeatedly, years later as a way to show the damage ME patients pose towards academic freedom, freedom of speech, and not least how mean we are to doctors/researchers just wanting to help. The same with the Sharpe interview about being harassed (I think I saw it in a Norwegian comment only a week ago!).

I have met many with invisible illnesses where that complain about not being believed about the seriousness of their illness, not having their symptoms taken seriously etc., I don't meet many others who are met with disbelief that their illness even exists (and when I do, it is sadly often doctors who disbelieve their very real conditions such as meat allergies and lipedema, but that is of course also a function of what type of patient I would be likely to meet).

 

[Jonathan Edwards]

I don't meet many others who are met with disbelief that their illness even exists

I think part of the problem is that 'ME' didn't in fact exist. It was a mistaken concept. ME/CFS does, but that is too complicated for most people.

 

[MrMagoo]

People don’t disbelieve ME/CFS because it’s invisible. They don’t believe what they can see isn’t something else.

What it actually looks like “but you can do it sometimes” or “might just be depression” or “you’re an attention seeker” or “you’ve got lazy” or “you’ll be ok if you just….” Because that’s how everything else works. That’s why BPS is so successful, it taps into that. BPS makes perfect sense to the bystander.


People are also aware of severely unwell patients trapped in bed for years, so they’ve no time for you standing there in front of them saying you have the same thing.

 

[Midnattsol]

I think part of the problem is that 'ME' didn't in fact exist. It was a mistaken concept. ME/CFS does, but that is too complicated for most people.

I honestly don't think most healthcare workers (or others) are aware enough of how a specific diagnose came to be to say it didn't exist due to this and that.

At one of the largest hospitals in Norway, the internal knowledge database is a mismash of the terms "ME", "CFS", "ME/CFS", "CFS/ME", "SEID" and "CF" for the same thing. In Norway until a few weeks ago "CFS/ME" was the official term (and in some ways it still is, what changed recently was an official guideline document that uses ME/CFS, I don't know how that will influence others yet).

But when it comes to nutrition, none of it should matter as there are other guidelines for how to care for undernourished patients.

 

[Jonathan Edwards]

I honestly don't think most healthcare workers (or others) are aware enough of how a specific diagnose came to be to say it didn't exist due to this and that.

It was something that all doctors in my generation were aware of. The speculation that there had been an outbreak of 'ME' at the Royal Free Hospital in London which never materialised as a definable new viral disease.

 

[Sean]

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.

Sadly, this.

 

[Revel]

I don't think that is true. Kids at school do not believe their friends with ME/CFS. Parents don't believe their children. Employers don't believe their workers. Because there is nothing to see. In general they have no knowledge of any biopsychosocial theories. Even when I retired as a doctor I had never heard of Wessely, Chalder, Sharpe, White and their theories.

My parents didn't believe that my ME was anything other than a psychiatric issue entirely because that was what they were told by the hospital doctors during the 10 weeks that I was an inpatient when I was 9, desperately ill at that point and given less than a week to live.

My parents shared this misinformation with family and friends, who then passed it on to their children.

When I was discharged from hospital, the doctors told my parents to make no concessions to my lack of energy and the fact that I was still clearly very underweight. They were adamant that I should return to school full-time from the outset and that I should be made to participate in all aspects of the curriculum, including P.E.

Thankfully, my teachers had more sense than my doctors. Despite medical advice to the contrary, the teachers allowed me to take breaks during class and made sure that I abstained from P.E. because it was obvious to them that I was struggling to cope with the level of physical activity required. My young classmates were also aware that I was still very unwell because they were not blind to what they could see with their own eyes and at that age had not been told otherwise by ill-informed adults.

Ultimately, and unsurprisingly, I relapsed badly on changing to a new school without this support and had to be hospitalised again, this time for 9 months. I was never able to return to school again.

My parents and family still do not believe in ME, despite watching me suffer for decades, because that is what they were told all those years ago by the hospital. They think I have willfully chosen this tortured life.

Present day, during a face to face appointment, my current GP stated that he considers ME to be nothing more than a label to cover a mental health issue. He is still my GP because I have no choice, given where I reside.

Nothing will change until the NHS as a whole leaves behind the psychosocial model and stands with us and not against us. Only then will the truth trickle down through society to the kids, to the parents, to the employers, and pwME will finally be treated with the care and respect we deserve.

Unfortunately, I very much doubt that I will live to see the day.

 

[Jonathan Edwards]

Nothing will change until the NHS as a whole leaves behind the psychosocial model and stands with us and not against us. Only then will the truth trickle down through society to the kids, to the parents, to the employers, and pwME will finally be treated with the care and respect we deserve.

Agreed. With that aim I have just sent off an open letter to BACME, copied to the DHSC people working on a new service template. It will have its own thread in a minute.

 

[rvallee]

My parents didn't believe that my ME was anything other than a psychiatric issue entirely because that was what they were told by the hospital doctors during the 10 weeks that I was an inpatient when I was 9, desperately ill at that point and given less than a week to live.

My parents shared this misinformation with family and friends, who then passed it on to their children.

Every single one of the desperate pleas for help that I have seen from severe patients who are denied any form of help or support, including refusing to provide food unless they go to the kitchen to eat at the table during meal time, says that their physician agrees with their parents/carers. They are all encouraged to withhold any support and encourage pushing through, backed by traditional biopsychosocial/psychosomatic opinions, and don't believe it's a real illness.

Every single one. Very few people would be this cruel without a permission structure for cruelty. If the medical profession did not encourage this, 90+% of it would vanish entirely, probably up to 99%. This is almost an entirely manufactured problem.

 

[hotblack]

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.

We all live in hope of being positively surprised.