Gresham College lecture

[rosamary]

I don't know if anyone is interested in reading the transcript of today's lecture...

http://www.gresham.ac.uk/lectures-a...-fatigue-syndrome-not-just-tired-all-the-time

 

[*GG*]

No video?

GG

 

[Esther12]

Miller is such a turd.

The promotion of CBT and GET is getting more vague and evasive. Wonder what the new BACME guide will be like.

We can use drugs to ameliorate some of the symptoms such as pain, depression, nausea etc although characteristically, patients with CFS/ME often do not derive much benefit from drug therapy and are often intolerant of drugs. BACME is just about to publish a guide aimed at GPs and other clinicians about an approach to symptom management in CFS/ME.

The only current therapeutic approach for which there is some evidence is using either cognitive behaviour therapy (CBT) or graded exercise therapy (GET). These are controversial approaches because some patients feel it incongruous that they are told that CFS/ME is not a “psychological condition” and yet we are going to use a psychological therapy for it.

However, CBT is extensively and beneficially employed in many other chronic conditions such as cancer and rheumatoid arthritis, so there is nothing illogical in using it for CFS/ME. It does not work for everyone but it is unlikely to cause any harm (White at al. Lancet 2011; vol 377; issue 9768) and is worth trying.

Conclusion

CFS/ME despite a huge research effort remains an ill understood and “medically unexplained syndrome”. It is capable of a positive diagnosis although there is no specific test or biomarker. It should be specifically diagnosed either in primary or secondary care and consideration should be given to referring patients for specific therapies.

 

[Snowdrop]

If the efficacy of CBT/GET is as described it is not very robust--so why continue to push so hard for it's use?
Well, we know the answer. But the general practitioner or even specialist does not have a clue.
At least they've been upgraded to controversial.

 

[rosamary]

'However, CBT is extensively and beneficially employed in many other chronic conditions such as cancer and rheumatoid arthritis, so there is nothing illogical in using it for CFS/ME. It does not work for everyone but it is unlikely to cause any harm (White at al. Lancet 2011; vol 377; issue 9768) and is worth trying.'

Really scraping the bottom of the barrel there, I feel.

'unlikely to cause any harm' ?????

Discovering that it hasn't done any good is hardly likely to improve matters for a patient. Especially if they are encouraged to believe that the whole problem is their own fault.

All very wishy-washy.

 

[Esther12]

These are controversial approaches because some patients feel it incongruous that they are told that CFS/ME is not a “psychological condition” and yet we are going to use a psychological therapy for it.

With Miller, I can find it hard to work out whether he thinks patients are really stupid, or if he's just really stupid.

Similar stuff from his slides:

Two extreme views

CFS is a pure physical problem and psychological issues and therapy have no role in pathogenesis or management

CFS is psychiatric/psychological condition and there is no disordered physiology

A sterile debate

“It is puzzling indeed to me to see how the concept of a seperateness of mind and body can have continuing legitimacy in contemporary medicine and science”

Tony Pinching. A tale of two syndromes
Clinical Medicine 2003

Pathogenesis (3 Ps)

Predisposing
Genetic
20% have family history. Relative risk increases according to closeness
Twin study (55% monzygotes 19% dizygote)
No conclusive gene studies linking to phenotype
Is association genetic or exposure

Precipitating
Infection, vaccination, stress, toxin, life events
Double hit

Perpetuating
Illness beliefs
Law suits
Searching for a cause
Extremes of activity

If we removed all the perpetuating factors, shouldn't that mean that the illness stopped?

He had three slides on XMRV for some reason.

He does mention "Lack of blinding" on PACE.

Looks like the 'transcript' was rather lacking in a lot of details.

 

[user9876]

CBT and Get are controversial because patient surveys suggest they cause harm and trial have a dodgy methodology and even then the results are heavily spun. The methodology is dodgy because they ask patients how they feel, tell them they should feel differently, ask patients again how they feel and get a slightly different response.

I tend to think he has taken sides in a debate that he doesn't understand because its framed by White rather than listening to patients who want effective treatments and research leading to them. I also wonder if he has actually read and thought about the trial evidence and looked at the criticisms of PACE. Perhaps he is someone who has just emotionally bought into one view and won't change unless it is so obvious that he is wrong its too embarrassing to keep with his opinions.

What really concerns me is Drs like him repeating a very negative message about ME and why Doctors feel bitter when their work is questioned rather than looking at the evidence and likely research paths and ways forward. Its very negative to look backwards in this way and not at all helpful. So why so much on XMRV - I see its worth talking about the lack of evidence of a single pathogen. But then why not spend the time on studies which suggest a route forward with useful evidence.

 

[Valentijn]

'However, CBT is extensively and beneficially employed in many other chronic conditions such as cancer and rheumatoid arthritis, so there is nothing illogical in using it for CFS/ME. It does not work for everyone but it is unlikely to cause any harm (White at al. Lancet 2011; vol 377; issue 9768) and is worth trying.'

Really scraping the bottom of the barrel there, I feel.

'unlikely to cause any harm' ?????

Discovering that it hasn't done any good is hardly likely to improve matters for a patient. Especially if they are encouraged to believe that the whole problem is their own fault.

All very wishy-washy.

I think the bigger problem is that comparing CBT-for-ME with CBT for other diseases is deceitful to the point of being a bald-faced lie. The CBT practiced in other diseases is used to help patients cope with being ill. The CBT being sold for use upon ME patients is focused at brainwashing them into rejecting their illness and discouraging them from attempting to cope with it.

These completely different treatments should not be permitted to have the same label.

 

[user9876]

Looking through the slides he has obviously heard of the IoM report and name but he doesn't seem to have mentioned any of their material.

Also ignoring Rituximab, recent brain scan results and exertion testing, Lipkins cytokine work etc

It feels like a talk he has been doing the rounds with for a few years and that he is not up to date with current research of at least not confident in talking about it. (although the cynic in me would suggest that when something doesn't tie in with his view he is putting his fingers in his ears and singing la la la so that he doesn't hear). Looking at the slides my guess is he believes ME is a form of depression.

Also I noted the Action for ME slide so I wonder if he is passing this off as their opinion.

Its certainly not a talk thats going to inform and inspire doctors to treat and research ME.

 

[Bob]

I think the bigger problem is that comparing CBT-for-ME with CBT for other diseases is deceitful to the point of being a bald-faced lie. The CBT practiced in other diseases is used to help patients cope with being ill. The CBT being sold for use upon ME patients is focused at brainwashing them into rejecting their illness and discouraging them from attempting to cope with it.

These completely different treatments should not be permitted to have the same label.

Yes, also CBT for ME is intended to 'reverse' the illness itself, supposedly leading to 'recovery', whereas CBT for cancer is not intended to 'reverse' the tumour. If such a program of CBT was promoted for cancer, severe action would be taken against those who promoted it. But for ME, it's OK to promote such claims, apparently, despite the lack of evidence.

 

[rosamary]

Does he really care?

'Alastair retired from Liverpool in 2014 to spend more time in the mountains but continues to work one day a week in London at JRCPTB and one day a week in acute medicine for Northumbria Acute NHS Trust'

To be honest, I think he needs A LOT MORE TIME IN THE MOUNTAINS.

I have the impression that he is very closely connected with White, Wessely etc.

Shame he is the able to spread the CBT sickness via his one day's work at the
Joint Royal Colleges of Physicians Training Board

http://www.jrcptb.org.uk/


Hopefully, he will do some volunteering in the Himalayas permanently and leave this type of work to someone less 'establishment' suctioned.

 

[Snow Leopard]

The biggest myth is the claim that there has been a 'huge research effort'...

 

[Cheshire]

The video is online...

 

[eafw]

Professor Julia Newton and Jason Ellis gave the follow up talk today. Transcripts are available, fairly easy read not too long.

I'd started another thread for them

http://forums.phoenixrising.me/inde...nscripts-from-talk-today-26th-may-2015.37707/

 

[WillowJ]

unfortunately they do use CBT in cancer/similar, to supposedly "cure" the fatigue of such diseases, and to pretend to "boost" the immune system through "positive thinking" which is for some inane reason (read: really bad methods and wishful thinking) thought to improve chance of survival.

It's not only us. It's really dismal critical thinking skills, terrible methods, and a failed peer review process.

The difference in us is that we have few people to stand up for us, and virtually no one to say "how silly; that's an actual important disease and can't be cured by happy thoughts and unicorns".