Severe difficulties with eating in ME/CFS

This whole situation is greatly distressing. I weep for us and for all future patients that may face this runaway push in medicine. It seems to me that this is all for the advantage of doctors who don't want to deal with these patients, and not for the good of the patients themselves. It makes me never want to go to any doctor again unless I have a very clear problem such as a broken bone. My trust in the medical profession sadly is quickly dissipating.
 
It should be no problem for a psychiatrist or eating disorder specialist to exclude an eating disorder (as per DSM/ICD) as they are based on problems with moderate to severe body dysmorphia with restricted diet or binge eating and voiding food by some manner (self-induced vomiting, laxative use etc). Just requires careful history taking of the person, family and friends etc.

Though no doubt some clinicians get very confused at times and/or do not understand the psychological developmental issues that may be occurring especially for children and young people with ME. The primary medical team can discuss the case with a child and adolescent or youth or adult psychiatrist/clinical psychologist.

Of course, one has to have one available to do this assessment, in a timely fashion, as often they may need to meet the person and their family/carers etc.
 
The discrepancy that J.E. points out, that ME patient seem to be treated worse than patients with clear cut mental illness (in this case Anorexia Nervosa, or any illness where the patient might end up malnourished) in my opinion could be explained this way:

Mental illness has historically (until a few decades ago) had doctors treating the patients in just about the most ruthless way possible. It was through trial and error that eventually psychiatrists figured out being that cruel does not really accomplish anything, and the more reasonable approach that is mainstream today was gradually adopted. Experience also plays a role - if you are a psychiatrist and you've seen hundreds patients with anorexia Nervosa you more or less know what to expect.

In a hospital context, the psychiatrist has the mental aspect covered. Gastroenterologists, if anything, are just there to make sure the patient doesn't die from malnourishment while the psychiatric treatment is being administered, or to exclude gastro illness.

The problem with ME and with "functional" disorder is that it's perceived as a mental illness even though it isn't. This means that the psychiatrist does not have the situation under control, and in fact they are completely useless. The burden of dealing with the illness thus goes back to the gastroenterologists. They have to make sense of the whole thing and, not knowing any better (since they don't have any training on this) they go back to the old-school method of (metaphorically) beating the patient with a stick until they come to their senses about their nonsensical beliefs. So that means of course no tube feeding.

From my experience, the doctors who use this very hostile approach towards perceived mental patients are not psychiatrists. They are neurologists, rheumatologist, gastroenterologists, etc.

An alternative explanation is of course that not every psychiatrist has abandoned the old method - people like Sharpe and Wessely are very content with being as evil as they can with patients. If they were asked to advise the gastro society then that would explain the guidelines.
 
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A bit too tired to join in on the discussion, but: I want to point out that ME being treated worse than other illnesses re nutrition is not necessarily true.

I don't think Norway stand out in a negative way when it comes to nutrition, but as previously mentioned: Nutrition screening is not performed even when it is mandated (so undernutrition is not discovered), patients are not asked about what they eat (so other types of malnutrition is not discovered). Nutrition is very much seen as something patients can deal with themselves and have little to do with whatever is going on with them. This is true also for diseases where we have more literature on prevalence and consequences of malnutrition than ME.
 
hibiscuswahine said:
Though no doubt some clinicians get very confused at times and/or do not understand the psychological developmental issues that may be occurring especially for children and young people with ME. The primary medical team can discuss the case with a child and adolescent or youth or adult psychiatrist/clinical psychologist.
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But surely the whole point is that nobody actually knows anything about the psychodynamics here and it is irrelevant. There is no need to get a psychologist involved if we have no evidence for it being beneficial. Why pry into childhoods when it makes no difference?

The need is to get the person nourished and that requires feeding by a means that works.

The gastroenterologist writing about this claims that there are eating disorders without body dysmorphism. I strongly suspect that is right. Body dysmorphism may be a factor but why assume it always is? As the Queen's physician, Sir Anthony Dawson, said to me in 1977 'we need to avoid Procrustean medicine'. In other words in 1977 the UK's top gastroenterologist actually understood the problem - we need to forget theories and get on with treatment.
 
I realise that it will be unpopular but I am going to say that I think people with severe ME and severe difficulties with eating do have an eating disorder, just as children after treatment of craniopharyngeoma have an eating disorder, and people with anorexia nervosa and my wife with her post-malarone psychosis. These are all eating disorders. In every case some part of the brain is preventing feeding properly.

I may be wrong about this but rather than fan the flames of argument with half baked theories about EDS, or mast cell activation, or SIBO, or gastroparesis, or ME being a 'multi system disease' would it not be better to have a working hypothesis that ME is a disease that affects the brain and in its severe form leads to an eating disorder? The mechanism may involve the brain inducing gastroparesis through the vagus nerve (I cannot think of any other reason for gastroparesis) or inducing SIBO secondary to poor intake or whatever but the brain is still doing it.

If ME were recognised as one form of potentially lethal eating disorder then there would be nothing for anyone to argue about and so nothing to get in the way of treatment.
 
At the moment we have the gastroenterologist Peter Paine on one side and Drs Speight and Weir on the other saying completely different things, with patients fallen through the gap in the middle. Surely, what we need is for health professionals to agree on a way of understanding the problem and a policy. That nettle has been grasped for GET and a decision made, even if many health care professionals and Royal Colleges have dragged their feet. It seems that NICE made gestures in the right direction on nutrition but failed to address the seriousness of the problem.
 
Midnattsol said:
A bit too tired to join in on the discussion, but: I want to point out that ME being treated worse than other illnesses re nutrition is not necessarily true.
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Yes, this seems to be what the Guardian article is flagging up.

It is useful to be aware of that but it still looks as if amongst gastroenterologists in charge of nutrition that bad policy, based on on no adequate evidence, is being recommended for conditions like ME.
 
strategist said:
Eating disorder has this connotation of psychological cause. Which then leads to helpless patients being assaulted with strange theories.
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Well, we have to educate people. Eating disorder just means eating disorder. People whose hypothalamus has been damaged so that it no longer control appetite have an eating disorder. Rather than perpetuating this psychological/physical argument why not get people to understand something that makes sense?

I am pretty sure that the most crucial factor in failure to feed people with severe ME in many cases is a spiralling antagonism centred around bogus theories of the inability to eat being a 'physical' problem. In as much as this means anything I am pretty sure it isn't. There is no blockage or malabsorption. The problem is almost certainly that the brain prevents eating through its effects on the autonomic nervous system.
 
Jonathan Edwards said:
I am pretty sure that the most crucial factor in failure to feed people with severe ME in many cases is a spiralling antagonism centred around bogus theories of the inability to eat being a 'physical' problem.
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That could be true. I don't know since I haven't been in this situation.

We patients probably use these theories of to resist psychologization and because we hope that they might help. Not because we want to resist an uncomfortable truth (like the psychologizers like to believe) but to resist an a harmful untruth being imposed by an authority figure.

I at least learned early that healthy people express their own conflicts and insecurities with regards to the illness by psychologizing it. It gives the the illusion of control and that everything will be allright once the patient just stops behaving silly. Sadly this is really the road of neglect, with predictable results.
 
My experience was more of a digesting disorder, not an eating disorder. In the same way if I tried moving around more, well I could but then I got symptomatically worse; if I tried eating I could eat, but then I got symptomatically worse. Initially there wasn't a lack of desire to eat and I knew I had to, so resolved to try eating small amounts a little more frequently. With my wife smartly recognising that high carb meals in particular were flooring me, that approach seemed to work, but it was a painful and lengthy process. Now I can manage normal (let's say wife-size*) meals without much problem and can mostly eat them with relative gusto rather than eeking it out over an hour (low carb diet and probiotics well established). I wouldn't try anything extravagant though and sometimes still get caught out overdoing it a shade, but certainly nothing like it was.

When problematic earlier on, I guess I did lose interest in eating, probably in the same way I lost interest in moving or trying to sit upright. But it wasn't lack of desire to do these normal things, just a recognition that they were now things that were bad for me, for some unknown period of time. I think when doctors might see a patient at some point down the line, then it could well look like an abnormal belief about eating, but they would have missed all the steps that led up to that picture, which I would frame as a perfectly sensible response to the significant loss of function (whatever the underlying cause is).

*I don't mean the size of my wife!
 
Jonathan Edwards said:
I realise that it will be unpopular but I am going to say that I think people with severe ME and severe difficulties with eating do have an eating disorder, just as children after treatment of craniopharyngeoma have an eating disorder, and people with anorexia nervosa and my wife with her post-malarone psychosis. These are all eating disorders. In every case some part of the brain is preventing feeding properly.

I may be wrong about this but rather than fan the flames of argument with half baked theories about EDS, or mast cell activation, or SIBO, or gastroparesis, or ME being a 'multi system disease' would it not be better to have a working hypothesis that ME is a disease that affects the brain and in its severe form leads to an eating disorder?
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I'm trying to understand. I understand the point that giving someone who is unwilling to eat because of a medication-induced psychosis psychotherapy to examine their childhood traumas is unhelpful. There's a neurological cause rather than a psychological one; the strategy should be 'keep the person alive long enough to address the underlying cause'. The big problem with ME/CFS is that we don't know what the underlying cause is.

Yes, in ME/CFS there might be a problem in the brain. Something that makes the sensation of fatigue, and that makes some people have severe eating problems. So, not a psychological problem with thinking caused by childhood trauma, but instead a problem resulting from, I don't know, activated microglia or a damaged brain stem or an intracellular infection close to the vagal nerve or something. Maybe 'sickness behaviour' in overdrive causes anorexia. But it might also be a problem that really does make muscles in the gastrointestinal system not work properly. I don't think we really know.

I don't think we should have to say the problem is essentially a psychosis, to make an argument for better care of people with ME/CFS with eating difficulties. Can't we just get clinicians to accept that anyone who is struggling to eat for whatever reason should receive whatever treatment actually keeps them nourished? You can't fix someone who has already died of starvation.

Jonathan Edwards said:
I am pretty sure that the most crucial factor in failure to feed people with severe ME in many cases is a spiralling antagonism centred around bogus theories of the inability to eat being a 'physical' problem.
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I'm sure sometimes ME/CFS patients and their families can be very difficult, and bogus theories contribute to that. The ideas without evidence that are out there worry me too. But, I'm not sure that thinking an inability to eat is a physical problem when there is severe abdominal pain or difficulty swallowing or constipation is terribly bogus. I think there are questions there that deserve research before conclusions are drawn.
 
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Hutan said:
There's a neurological cause rather than a psychological one; the strategy should be 'keep the person alive long enough to address the underlying cause'. The big problem with ME/CFS is that we don't know what the underlying cause is.
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Not quite, because nobody has any more idea what the causal mechanism is for psychosis. The treatment is entirely pragmatic.
 
I think we should probably avoid using the term eating disorder in ME/CFS because 'eating disorder' and 'anorexia' are so tied in the minds of all varieties of clinicians with it being a psychological disorder, in other words a disorder of thoughts that includes faulty thinking that is preventing the person eating adequately.

If we go down that path we get caught in the same trap we did with the CBT/GET approach that views our difficulties with physical activity as being the result of faulty cognitions.

I think it would be better to refer to it as failure or disorder of nutrition.

That doesn't make any assumptions about cause - whether it be lack of physical ability to chew or swallow, or gut symptoms such as failed motility or pain, or malabsorption, or food intolerance, or digestive failure or whatever.

And calling it a disorder of nutrition means the focus is on finding ways to enable adequate nutrition. This can include medications to improve motility or digestion, or to reduce pain, changing the content of the diet, smaller or liquid meals, or more invasive methods like tube feeding. The individual should work with a dietician and any other specialisms needed to work out how adequate nutrition can be restored.

The only possible role I can see for psychiatry or psychological therapy would be to rule out it being a psychological problem.
 
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