The MEpedia page on Myalgic Encephalomyelitis

[Sasha]

I am not sure that the IOM did anyone any favours by suggesting ME should be 'put on the map as a biological illness'. All illnesses are biological.

False beliefs aren't biological, though - and the narrative that's been imposed on us is that we falsely believe ourselves to be ill. If there is evidence that our illness is biological, I think we need to be flagging it up. Otherwise, that dominant narrative stands.

 

[Jonathan Edwards]

False beliefs aren't biological, though - and the narrative that's been imposed on us is that we falsely believe ourselves to be ill. If there is evidence that our illness is biological, I think we need to be flagging it up. Otherwise, that dominant narrative stands.

False beliefs are as biological as anything else. The fly's false belief that an orchid is a mate is an essential part of the symbiotic biology. The mind is biological. It is only the BPS people who insist that the mind is different from the body and 'interacts' with it.

 

[Jonathan Edwards]

So would it be more accurate to describe ME as a disease of unknown cause that leads to symptoms across multiple systems including neurological symptoms.

I worry about any classification of ME since we don't have a good hypothesis about cause. But we do know about the symptoms and that is how the disease is described.

I would not say ME is a disease. I would say it is a name for a medical condition or disordered pattern of physiology that includes neurological symptoms. As soon as one puts causal steps in the explanation you start getting into muddles of terminology. When we talk of ME we tend to think that there is likely to be some underlying process that causes symptoms but until we know what that is or they are ME is a term for the observed state, rather than a cause or an effect.

 

[Sasha]

False beliefs are as biological as anything else. The fly's false belief that an orchid is a mate is an essential part of the symbiotic biology. The mind is biological. It is only the BPS people who insist that the mind is different from the body and 'interacts' with it.

I'd agree that thoughts arise from a biological brain but an incorrect deduction (which is what the BPS idea of ME is based on) can be dealt with by logic and changed - beliefs are not fixed and part of a diseased biology. All you have to do to get well is change your ideas, which is perfectly possible (and totally ineffective for ME, as it turns out).

 

[Jonathan Edwards]

I'd agree that thoughts arise from a biological brain but an incorrect deduction (which is what the BPS idea of ME is based on) can be dealt with by logic and changed - beliefs are not fixed and part of a diseased biology. All you have to do to get well is change your ideas, which is perfectly possible (and totally ineffective for ME, as it turns out).

I very much agree with the sentiment, @Sasha, but it is still all biology. And the distinction is not as sharp as we all tend to think. When my wife became mentally ill after taking antimalarials her illness consisted largely of false beliefs, including paranoia and a belief that her intestines were blocked. She very nearly starved to death. In the early stages I could talk her out of her false beliefs in the early afternoon, only for them to return at night.

I don't think ME is in any way similar - in fact it is sort of opposite - but it illustrates the fact that brains and minds work in ways we simply do not understand. Perhaps most significantly, they work in ways that psychiatrists seem to completely misunderstand. How best to put across the fact that however hard they try PWME cannot make any difference to their disability by thinking this or that is not easy to judge. Maybe one should simply say that - PWME cannot make any difference to their disability by thinking this or that. So there is no earthly point in trying to get them to think something dreamt up by a psychiatrist and delivered in a patronising tone by a psychologist.

 

[Sasha]

I very much agree with the sentiment, @Sasha, but it is still all biology. And the distinction is not as sharp as we all tend to think. When my wife became mentally ill after taking antimalarials her illness consisted largely of false beliefs, including paranoia and a belief that her intestines were blocked. She very nearly starved to death. In the early stages I could talk her out of her false beliefs in the early afternoon, only for them to return at night.

I agree that people can have irrational thoughts that are being driven by something seriously amiss in the brain (I've seen this first-hand myself in a loved one with depression), but I don't think it follows that all false beliefs are biological.

 

[Jonathan Edwards]

It is interesting reading the Sharpe chapter in the psychiatry book flagged up on a new thread. It reminds me that this term 'biological' was brought in by the psychiatrists - to contrast with psychological. The rest of us in research would not use biological because we assume everything is.

So every time someone says 'but ME is biological' they are really acknowledging the validity of there being another view - psychological. And that is how it reads, making one think. 'Why do people keep saying it's biological, someone must have said it was something else - maybe they are right.'

The biological word was dropped into the discourse as a trap by BPS so that they can say it is more than that. It is a bit like the homeopaths inventing 'allopathic medicine'.

 

[Jonathan Edwards]

I agree that people can have irrational thoughts that are being driven by something seriously amiss in the brain (I've seen this first-hand myself in a loved one with depression), but I don't think it follows that all false beliefs are biological.

So what else are they @Sasha? Are you a dualist who believes that psychological causes are different from biological causes - like Dr Sharpe and Dr White? Biology is the study of any and all causal processes in living things. If it is suggested that beliefs are causal then they are biological.

 

[Adrian]

It is interesting reading the Sharpe chapter in the psychiatry book flagged up on a new thread. It reminds me that this term 'biological' was brought in by the psychiatrists - to contrast with psychological. The rest of us in research would not use biological because we assume everything is.

So every time someone says 'but ME is biological' they are really acknowledging the validity of there being another view - psychological. And that is how it reads, making one think. 'Why do people keep saying it's biological, someone must have said it was something else - maybe they are right.'

The biological word was dropped into the discourse as a trap by BPS so that they can say it is more than that. It is a bit like the homeopaths inventing 'allopathic medicine'.

I agree with this. Sometimes I think it has become a short hand way of saying that CBT/GET don't work and hence the theories behind them don't work. I don't know how it was introduced but I have felt that it was introduced by Wessely and friends as a diversionary tactic and so they could feel clever talking about duelism (and divert from the fact that their treatments don't work).

 

[Adrian]

So what else are they @Sasha? Are you a dualist who believes that psychological causes are different from biological causes - like Dr Sharpe and Dr White? Biology is the study of any and all causal processes in living things. If it is suggested that beliefs are causal then they are biological.

But they may data driven (for example, due to mental representations/knowledge encoding learned due to environmental signals) rather that due to the biological mechanism that allow such mental representations to form and exist.

 

[Sasha]

So what else are they @Sasha? Are you a dualist who believes that psychological causes are different from biological causes - like Dr Sharpe and Dr White? Biology is the study of any and all causal processes in living things. If it is suggested that beliefs are causal then they are biological.

I should have known better than to get into an argument about dualism and it's probably beyond my brainfogged capabilities to stay with it. But we began this line of discussion because you said that all diseases were biological and so there was no mileage in pushing ME as a biological illness. But the BPS school are pushing it as a psychological one of a particular type - one in which we patients have reached a false conclusion based on faulty logic. The PACE paper makes it clear that their model is one in which we get sick from something acute, become deconditioned, and then when we try to become active again, we interpret the resulting feelings of stiffness and discomfort as indicating a disease process so we avoid activity and remain deconditioned.

Is faulty logic a biological cause of disease? I don't think it makes any sense to say so.

 

[Robert 1973]

So what else are they @Sasha? Are you a dualist who believes that psychological causes are different from biological causes - like Dr Sharpe and Dr White? Biology is the study of any and all causal processes in living things. If it is suggested that beliefs are causal then they are biological.

Is “organic” a more useful term than “biological”?

Whenever I hear the term biological in discussions about ME I think of Prof Crawley’s interview on the Today programme explaining how she changes people’s biology with psychological/behavioural interventions.

Is there a Godwin-esque Law which states that the longer any discussion about ME continues, the probability that it will end up as a debate about mind-body dualism approaches 1?

 

[Cinders66]

Sasha has replied succinctly, here’s my waffle

ME wasn’t treated as biologically physical or biologically driven psychiatric in the way you describe @Jonathan Edwards or in the way anorexia or schizophrenia might be now thought . The biological aspect of the BPS model was either ignored or thought preliminary, the trigger, or minor or generally insignificant, unimportant. Wessely , who cares about viruses, we just keep on keeping on with effective rehabilitation, paraphrasing.

The illness or “condition” they would probably prefer, in terms of biology was a combination of dysregulation, reversible through behaviour, deconditioning, reversible through the behaviour, sensitisation, reversible through behaviour or exposure, mild but inconsistent immune stuff, who cares if we can reverse it through behaviour. It wasn’t talked of in terms serious immune challenges being looked at now for example t-cells, the mitochondria dysfunction idea was sneered at, although it now could be widespread and all the other stuff, serious ANS dysfunction etc. Our biological abnormalities weren’t serious and often largely irreversible like other illness.

Our unhelpful beliefs on being “physically unwell” and therefore unable to do exercise were more just irrational (we are western self obsessive, female) , learned behaviour (from unhelpful support groups and a more sick sounding name ME) and so on, not driven by paranoia or depression or OCD type thinking, hence our being supposedly easy and cheap to fix Ie with a nurse trained briefly in CBT “reassuring us” there was no genuine obstacle in completing a graded activity program except our beliefs (FITENT) and that we just had as a difficulty a circadin rhythm disturbance or such. There are apparently psychological and social causes of beliefs, ie the belief that people of a certain race are a certain way is learned not driven biologically. That’s why I think the term unhelpful beliefs was used, they were simply unhelpful, easy to drop, re educate. We didnt need Drs or psychiatrists generally, or medicine, just an OT to inform , reassure, motivate and encourage. How appealing to the government, 250,000 rehabilitated by the cheapest health professional. People like Blakemore might have called ME a brain disorder but there was no brain research.

ME neglect was driven both by the belief cheap rehab was effective and that there was ” no organic cause” to use the language of MUS. Establishing to the medical community that there is organic cause after all or serious biological abnormalities (if they mean the same thing) seems crucial to me. I suspect organic and biological abnormalities mean different things as said above, so perhaps organic is better term as long as there’s agreement on it. Crawleys abnormalities are such as reversible inflammation which graded exercise supposedly will treat not exacerbate - many outside the group of mild, new, recovering, will struggle to find that sort of exercise because of their other biological abnormalities

 

[Jonathan Edwards]

But the BPS school are pushing it as a psychological one of a particular type - one in which we patients have reached a false conclusion based on faulty logic.

Yes, but a biologist would consider that biology. And organic means the same. I would steer clear of organic because it has for years been a technical term for the opposite of 'nuts' in medical parlance. Although these psychiatrists may not be very good at medicine they are good at manipulating discussions. They are very happy for people to say ME is biological or organic because it allows them to pop up from nowhere and say 'here we are, the people who really know that it is only partly biologic or organic - it is BPS'.

Another point we have mentioned before is that these false beliefs are unlikely to be due to faulty logic. They are outside logic - irrational. And one of the axioms of psychiatry is that if beliefs are genuinely irrational there is no point in trying to persuade people to change them with rational arguments - because they are outside rationality. So CBT for ME never made sense in the BPS theory terms.

 

[JenB]

As you know, I play devil's advocate because I want ME advocacy to be effective.

As long as it's evidence-based, I'm all for it!

Note: I didn't write this page, although I did recently edit it. It required *a lot* of work to even get it to this state and is definitely not finished. I don't think improving it requires a philosophical debate re: what MEpedia is. I just want this page to be accurate in all senses (I think there

What about:

"Myalgic Encephalomyelitis (ME) is a chronic, inflammatory, physically and neurologically disabling disease that presents with symptoms involving multiple bodily systems. Frequently triggered by a viral infection, it affects the central nervous system (CNS), immune system, cardiovascular system, endocrine system, and musculoskeletal system.[1][/a][2][/a] It has been classified by the World Health Organization (WHO) as a neurological disease since 1969[3][/a][4][/a] and has occurred in both epidemic and sporadic forms since at least the 1930s."

I find "physically and neurologically disabling" to be a little weird. I think a part of the problem is that while other diseases that are better understood can be reduced to a single, lead sentence, I find it very hard to do that with ME.

 

[Jonathan Edwards]

But they may data driven (for example, due to mental representations/knowledge encoding learned due to environmental signals) rather that due to the biological mechanism that allow such mental representations to form and exist.

I agree that within all this there is a perfectly reasonable distinction - in fact several reasonable distinctions. But until know what is actually going on in ME it is quite difficult to know which distinctions are the most relevant.

I guess my basic point is that using terms like biological is not going to convince anyone who thinks biologically and is grist to the mill for the BPS crowd. As estate agents will tell one, when putting across a marketing message it sometimes turns out that what seems like a strong point is a give away. A bit like 'There have been absolutely no floods in the last seven and a half months'.

 

[Alvin]

I find "physically and neurologically disabling" to be a little weird.

Thats my fault, i was working on it yesterday but have not got it right yet.
Sometimes i get into a rut where i know what i am trying to say but my wording goes awol. On better cognition days i am a better wordsmith but those are come and go.

I don't know if this is me or just an editing quirk but its sometimes easier to do a rewrite then a refinement of previous work

 

[JenB]

A core part of the problem is that it's possible that one, more than one, or none of the following statements is true:

• ME is a disease of the autonomic nervous system
• ME is a disease of the immune system
• ME is a disease of energy metabolism
• ME is a disease of central fatigue
• ME is a vascular disease
• ME is a chronic infection
• ME is an acquired, structural neurological defect

It may also be that some things are more or less true for different patients. And we have no idea what is cause and what is effect. And cause and effect may become meaningless as the illness progresses and you just have mutually re-inforcing cycles.

How do you wrap all of these possibilities into a single, opening sentence without possibly mischaracterizing the disease? The English language is amazing, so there must be a way, but I can't quite see it yet.

(And before arguing that any of the above are demonstrably not true, I know of specific cases of people who meet every diagnostic criteria for ME, have low NK function + exercise intolerance and other common findings, and later had a measurable and sometimes treatable case of one of the above. It doesn't mean any of their causes were THE cause, but we are a heterogenous lot.)

 

[JenB]

Thats my fault, i was working on it yesterday but have not got it right yet.
Sometimes i get into a rut where i know what i am trying to say but my wording goes awol. On better cognition days i am a better wordsmith but those are come and go.

I don't know if this is me or just an editing quirk but its sometimes easier to do a rewrite then a refinement of previous work

Alvin it's not your "fault!" It's an improvement over what was there and so helps us get closer to the "right" sentence, but I don't think it's quite there yet. This is really a tough one but I'm sure we'll get there together.

 

[JenB]

The rest of us in research would not use biological because we assume everything is.

This is SO important. Unless some researchers are after the immaterial soul, but I'm pretty sure that's beyond the reach of measurement or science.