The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

So he thinks patients are too ill to write a complaint or FOI but is happy to advise these patients do exercise?
To me that comment is just like others eg from rod liddle or the comments section was it .. “all these people are supposed to be so tired but they have plenty of energy to be online” .

 

I was being serious in post#56. Sample has a connection to someone who has written about "CFS", but I can't say more than that.

 

I agree entirely , it the proverbial "sheep" and "goats' all lumped together; Me?CFS/ vague "fatiguers"........ Likewise EC and the school children with a "diagnosis"- some who "respond" to LP as they do not have ME! They are "lumpers" we are "splitters".....

 

The primacy of persuasive rhetoric versus (edited word to versus) reason and evidence is the hallmark of psychobabble.

 

If I google for Ian Sample and Jo Marchant, I get results. Is that it?

 

Yes, been pondering a bit more, and can see how this mindset might have evolved. Note this is just my own mental ramblings, to take or leave, and no pretence at a historical description.

1. Psychiatrists will often be treating patients whose mental problems (sometimes mental illness, sometimes just where someone is at in their life) make them retreat deeply into their own shell. This can sometimes manifest itself as being extremely reluctant to do pretty much anything, including exercise. And it is a lethargic, introverted behaviour a person can become locked into.
2. Some of these patients may well become deconditioned to an extent if their behaviour persists, and thereby suffer from a persistent physical cause of fatigue, as well as due to their mental condition. I suspect these are primarily the sort of patients the BPS crowd labelled as having CFS, and arrogantly deemed to be the same as ME. Being the non-scientists they are, they just presumed that patients presenting with a subset of overlapping symptoms, must be suffering from the same underlying condition, their condition - CFS.
3. They maybe then forced the belief into popular culture that what they called CFS, was the same as another condition that people were calling ME, and which they believed did not really exist. So they hijacked 'ME' and bundled it into their BPS domain, by calling it CFS/ME, with ME the diminutive partner, with a view to dispensing with it altogether once they had proved the two were the same - except they never could.
   
4. So they ran the PACE trial to prove their point, in the absolute certainty in their minds they were right. (This can be said with confidence, because even now with the weight of scientific opinion building against them, they are still convinced they are right, and refuse to acknowledge any other possibility - hence 'non-scientists').
5. To their horror, they realised along the way that their magnificent trial was going awry, and not delivering the results they desperately needed to demonstrate. But they 'knew' they were right nonetheless, so presumed they must have just got their trial slightly wrong, so the fix was simple - tweak it until it gave the 'right' answers; what could be wrong with that? I really do believe they saw themselves as being right, and that being a valid thing to do. So again - non-scientists.
6. The NICE guidelines in the meantime also reflected the CFS/ME 'collusion', such that anyone presenting with ME-like symptoms got bundled into the same healthcare cage.
7. People like MS protest that PACE was really about CFS, when confronted with the BPS impact on PwME, yet never once use their supposed 'expert' status to point this fact out to NICE or the wider medical community. (And anyway the PACE manuals refer to CFS/ME). But instead bleat on about how people say unpleasant things, primarily truthful things that hurt ... truths that have caused immeasurable hurt to so many PwME.

 

I think its worth mentioning that having a history of depression and/or other mental health conditions doesn't just increase your risk of psychological problems - it also increases your risk of certain autoimmune diseases and other physical problems. Although I'm sure the depression link was mentioned in the podcast as a sneaky way to imply psychological causation, a higher incidence of prior mood disorders in PWME is not incompatible with ME being a physical disease.

 

Patients are simultaneously too ill to have a basic influence on research but they are also fierce militant activists capable of exercising their way out of severe disability.

Forget eminence-based medicine, this is bullshit-based medicine. The shark has been thoroughly jumped, and then some.

 

I think causation goes the other way - an autoimmune disease would make people more prone to depression. Partly this is because autoimmune diseases are often ignored by doctors for decades before they deign to treat them. Being in pain that is untreated for years is going to make anyone depressed, whatever the cause of the pain. And take hypothyroidism as an example. People who are hypothyroid have too little thyroid hormone, particularly T3, in the brain and elsewhere in the body. This isn't something that people can get over by being treated with anti-depressants. They need actual thyroid hormone supplementation. But in the UK this is very, very hard to get, and even if you get it, it's hard to get enough. And if you can't convert T4 into T3 then that's just tough.

 

This would be correct, there is no reason why one type of illness would prevent you getting another, but there is no evidence it happens. The most common way of getting ME is to be fine one day, get an infection and never recover.

There was research done by the BPSers in the 90s which showed people with ME had depression. When all questions about physical health - do you feel tired, do you have headaches and so on - were removed the association with depression disappeared.

This was preinterent and I can't remember who did the evaluations but she was an American academic. When one of the cabal sneered that she wasn't a doctor so why should they take anything she said seriously, she replied that she taught doctors

 

Basically the comments a dig. And powerful psychiatrists should not be taken swipes at patient groups on social media. He basically said in the interview he just wants pace left alone now, of course he does but why should we when it’s adversely influencing things. When he says stuff like patients are calling for a retraction because ‘we don’t like the paper “ it’s such disrespect to the patients criticisms and again is about trivializing and dismissing the patient voice. If you don’t want to work with your patient group, go do plant science not medicine or do the Pearing in from a distance epidemiology stuff Simon wisely chooses for himself.

 

But @fivetowns is suggesting that a history of depression etc. can increase the probability of autoimmune diseases, not simply leave the probability of it unchanged.

 

I think that is too recent maybe for him to be alluding to?

People with HIV / AIDS had support from others and I also have no problem with that. He seems to be insinuating that these "other" people have different ideas from real patients - which is bizarre.

 

@Mithriel I also didn't mean to imply that there was an increased history of mental ill health in PWME - only that it is incorrect to assume that such a link (if it existed) would be evidence of a psychological aetiology for ME. Looking back at my wording I didn't make it very clear. Sorry about that.

 

If someone says "studies show X increases the risk of Y" how often has that been rigorously demonstrated and how often has mere correlation been shown? That is how often do such statements arise from abusing the "correlation implies causation" fallacy?

 

It can be seen in their expected outcomes they used for their power calculations in the pre-trial documentation, which turned out so disconnected from the actual outcomes that they panicked.

I think they knew it wasn't kosher, but simply couldn't face having to admit that the patients and critics were right all along, with all that entails for their egos, reputations, careers, and lucrative MUS/IAPT empire. Plus they were and still are under huge political pressure from their patrons to deliver a result.

So here we are, 7 years later...

It is quite possible that the basic physiopathology is in place years before the apparent onset, and those pre-onset 'psycho-behavioural' symptoms are actually driven (directly or indirectly) by the disease process before it has fully expressed itself and been diagnosed.

There is a specific term for it, but can't recall it offhand.

 

All the time unless you are aware of the technical use of 'risk' here. Strictly speaking the statement should be 'a history of x increases the risk of y'. That is not intended to mean x causes y but that where there is a history of x the probability of y is higher. It should be read purely as a correlation. The only exception is where x is an inherited genetic factor, in which case it is usually legitimate to assume a causal link.

 

No problem, it was a valid point. I was trying to say that a lot of the evidence they use involves questionnaires for depression that include physical symptoms that occur in ME. By their definitions we all have depression!

Another one of the interesting pieces of research that has disappeared over the years was a doctor in the US who was detecting something he called stealth viruses from the brain. (The blood brain barrier is meant to prevent viruses reaching the brain so anything there is important). He believed they caused what were being called mental illnesses.

He gave an example of a teenager who had an infection then suddenly became depressed, resistant to treatment and went on to commit suicide.

I hope there is still work being done in the area.

 

That is what I thought must be the case. Is it well understood in medical and medical research circles that such statements only imply correlation? Somehow it feels like, after such statements have been repeated enough times, causality inferences get attached automatically (at least in the BPS sphere).

 

Done