Severe difficulties with eating in ME/CFS

rvallee said:
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.
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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 said:
You don’t have to know about prominent BPS individuals for the attitudes to have been normalised for example through media headlines.
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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.
 
Jonathan Edwards said:
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.
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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).
 
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.
 
Jonathan Edwards said:
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.
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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.
 
Midnattsol said:
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.
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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.
 
rvallee said:
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.
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Sadly, this.
 
Jonathan Edwards said:
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.
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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.
 
Revel said:
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.
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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.
 
Revel said:
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.
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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.
 
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