A perspective on causation of the chronic fatigue syndrome by considering its nosology, 2019, White

Wow. They are specifically undergoing forced review because of how bad they are, leading to abysmal quality of life, systemic discrimination and misinformation.

 

Memory is hazy but Wessely strongly argued many times that strength of belief was THE only predicting factor.

Which is entirely backwards. Sick people do think of themselves as sick and sicker people do think themselves as sicker. This is entirely expected and actually supports the fact that patients are actually good witnesses to their own bodily experience.

Their argument makes as much sense as arguing that since poor people describe themselves as poor then it must be why they are poor. Completely twisted and incompetent illogic.

 

Thank you for being relentless in countering disinformation.

 

Hi, Do you have a link to full paper, Russell? Thanks.

 

Another explanation could likely be there are two fundamental causes for comorbid depression in pwME, rather than just one:

• The debilitating impact of the illness itself on many areas of a person's life, same as for many other illnesses.
• The eternal uphill struggle of fighting against against embedded disbelief within the medical profession and society. That alone could lead to significant depressive symptoms.

The second point above should be very seriously considered.

I wonder if:

• PDW has considered the above?
• Which "other chronic disabling conditions" he is referring to? Does the list include ones dismissed similarly by the medical profession?
• Any studies have been done of depression in patients with other illnesses, where they also are treated so dismissively by the medical profession?
• Any studies have been done on prisoners jailed for long periods and subsequently proven innocent, especially ones with no previous history of depression? i.e. People similarly unjustly disbelieved, and the very particular mental anguish that ongoing unjust treatment loads onto people.

 

Hi Nasim,

I don't I'm afraid. Couldn't find it. Must be somewhere...?

This later website blog from the MEA in 2011 says I think that is should be in: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare, 1994. pp. 96-98.

But I'm not sure if it made publication elsewhere. I will however update the 2006 blog entry to reflect the above.

 

I'm not sure I would do that. Ellen Goudsmit says that the Task Force report published a wrong version of the London criteria.

 

Not a mention of his deconditioning hypothesis. He seems to have changed to central sensitization as so many proponents of GET (such as Lloyd en Nijs).

Bit embarrassing those mistakes about ICD-10, for someone with that many years of experience...

 

Thank you

 

I'm a bit cynical about why Peter White might write this now. Could it have been influenced at all by the work he does for insurance companies? Here's something written up following a presentation he gave:

See the attachment for the context.

 

Thanks, Russell, for getting back - but I meant the new Peter White paper, but have now read it, thank you! Sorry for confusion.

(Though I should say I have always been confused by London Criteria, did they just build on Ramsay? No need to answer, thinking aloud.)

 

Agree, Trish, having read his paper now, is just same old same old. Doesn't have a clue:

'So the question as to whether CFS/ME is a neurological or mental illness is clearly meaningless, since it has features of both, and cannot be classified convincingly as one or the other'.

He knows the PACE trial is dead in water so is trying to appear reasonable, and distance himself from harms done, that is my opinion. To endorse NICE, is hard to even believe he did, and also that he failed to mention it is being overhauled cos it is, well, crap.

He did mention SEID was useless, so that is interesting. I know my online friends w ME in USA are really concerned about SEID.

 

In light of his Lazarus-like resurrection from retirement, I'm wondering whether White's apparently renewed relationship with QMUL might have implications with respect to a prior FOIA case, where the Information Commissioner was told that data could not be accessed because he was the only person with the codes to unlock it.
On the face of it, that excuse now seems to lack any credibility and they could be held in contempt.

 

From the article we're discussing:

Reference #54, quoting his earlier work:
White PD, Rickards H, Zeman AZJ. Time to end the distinction
between mental and neurological illnesses. BMJ. 2012;344(may24 1):
e3454.
Full text (PDF): http://sci-hub.tw/10.1136/bmj.e3454

Well that's interesting!

These must be the biomarkers that appear in mental disorders that PDW was referring to:

 

I think there is a need to debate 'neurological' and 'mental' because the latter should I feel slide into the former regardless of our discussions around ME/CFS. 'Mental' is something I don't think anyone really feels is constructive, useful or fair.

But then they've been talking about merging 'psychiatry' and 'neurology' for a long time and we're still no closer. I'm not sure where it might leave psychology as a profession - maybe psychology is positioned correctly at present e.g. to be used in regard to all health problems working alongside specific disciplines that are relevant to the disease and who provide the primary tests and treatments etc.

Perhaps we should talk in terms of 'behavioural' and 'neurological' etc. but then arguably all disease has an impact on or leads to changes in, behaviour - just as it might be argued they do on 'mental' health if we use the current favoured terminology.

And science might reveal in ME/CFS that whatever disease processes are occurring in the various sub-groups, they actually do have a biological effect on what is currently considered 'mental health' and/or behaviour as well as an effect on e.g. other brain function, the immune system, CNS, energy metabolism, etc. Let's not forget the 'sickness response' research and theories.

But, if White and colleagues are arguing ME/CFS should be considered - in the absence of biomarkers etc. - both neurological and mental (and I'm not sure that they are in truth) then the same should also apply to other diseases.

When talk turns to 'treating the whole person and not just the disease' it's where I get even more concerned. It sounds better when there is an actual understanding of the disease and specific treatments, but in the absence of both, psychology (and psychiatry) arguably dominate and therapeutic approaches reign.

Approaches that either lack fundamental scientific credibility, or appear to possess a very weak evidence base and persist solely because they are cheap or because the medical profession has nothing else to offer.

 

I propose a thought experiment.

What would have happened if White et al had fallen upon the symptom of chronic headaches and proposed the diagnostic entity of chronic headache syndrome (CHS)? The Oxford criteria for CHS would be the presence of chronic headaches for six months or more, and they researched the use of behavioural/psychological interventions, CBT and GET, using experimental design designed to confirm the researchers expectations that their approach is an effective treatment for CHS.

 

People would have died.
That's the main difference that accounts for where we are. Not enough people have died with ME being on death certificate.

 

they sort of have already with 'Psychoneuroimmunology'. See Carmine Pariante. Gabrielle Murphy is a 'big fan'; see her talk (transcript) here
https://www.s4me.info/threads/speec...rence-2014-gabrielle-murphy.7597/#post-142867

maybe because the results of this review on MUS is due to come out soon

https://www.s4me.info/threads/medic...n-sutton-p-white-moss-moriss-buszewicz.10533/

 

That is a very good point, and begs a very important question: Given who PDW is, and his professional qualifications and experience, how could he possibly have overlooked the possibility that any additional depression prevalence in pwME could be due to the medical profession's behaviour towards them, and the despair that brings with it? Which brings me to wonder if he overlooked it at all? In which case, why omit to identify it in his paper, at least as a possibility? The latter is a rhetorical question of course, because we all know why he would choose not to. I find it beyond belief that he would not fully appreciate and understand this, and that he could not possibly have overlooked the thought at least, when writing his paper.