Report on 2016 BACME conference

[Sandman00747]

Kati
These days we call it 'alternative facts'


Or in today's terms it should also be referred to as " fake science ."

 

[Large Donner]

Are we next going to hear about "alternative evidence" and "alternative science" as well as "alternative reasoning"? .

That may happen when we start to hear the truth about the alternative government.

The media should stop using this term, and call it what it is - spin etc.

Ah, here in lies the problem. The media is the alternative government.

 

[user9876]

This is a most weird statement. It sounds like;
'Yes, I am a true daughter of the cultural revolution and always carry the little red book in my hand, even though I heard Chairman Mao died a while ago and the cultural revolution was a disaster.'

It almost sounds as if she had heard that someone had suggested that PACE was no longer a valid reference; can't think where.

It seems to me like issues with PACE have been raised and White told the audience that the results are as they stated. Not being researchers they did not question this and White being a professor they simply believe what they are told. The conference is effectively training information.

We need to continue to place the blame on White and QMUL for continuing to mislead both patients and medical staff. They along with Wessely are continuing the spin their results and in doing so are they are misleading everyone and acting unprofessionally.

 

[Jonathan Edwards]

It seems to me like issues with PACE have been raised and White told the audience that the results are as they stated. Not being researchers they did not question this and White being a professor they simply believe what they are told. The conference is effectively training information.

Or misinformation. I wonder if they had a session on cardigan style. I guess OT is really CVT, because they wear green (verts) cardigans. Sort of veggie CBT? I can see that pink cardigans would not really work, or yellow or black for that matter.

But what about Norwegian ones with those nice jaggedy up and down patterns in red and beige? Surely that would be the most effective. Inappropriate beliefs would not stand a chance faced with one of those.

 

[sarah darwins]

Hmmm, sounds like overcompensating to me.

Prof. Edwards' closet? :-

 

[Snowdrop]

I think they should identify themselves with silver and green scarves. :snake:

 

[MEisnotMUPS]

If you have not signed the Dutch petition, please consider doing so. Hans Knoop mentioned in the BACME conference report is on the Dutch Health Council committee writing advisory report on ME to Dutch Parliament. (He and Bleijenberg never corrrected their exaggerated claims about PACE recovery in their "where to pace from here" commentary in 2011. And like all BPS proponents, they do not shy away from exaggerating results from their own studies, still claiming full recovery with CBT is possible......and at the same time only focussing on fatigue and being lax with definitions of recovery)

"Full recovery as opposed to improvement was the treatment goal and the Dutch approach was strict in limiting the focus on fatigue and promoting diversion of attention away from fatigue."

"The research from the Netherlands concluded that CBT remains safe and is better than doing nothing at all. We heard about research comparing treatment protocols for CBT between the UK and the Netherlands with the Netherlands achieving more positive results. "

Please help us be heard. We have been subjected to this nonsense for decades now.

https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

 

[MEisnotMUPS]

Someone asked when the BACME conference was,
From this Dutch univeristy magazine, it becomes clear that Knoop was Keynote at BACME on 19th of October (2016) https://www.vumc.nl/afdelingen-themas/29849/27782/20751480

PAGE 17
19 oktober
Hans Knoop. ‘Recent developments in cognitive behaviour therapy for chronic fatigue syndrome’. Keynote BACME Conference, British Association for CVS/ME, Milton Keynes, UK.

One day earlier he spoke at King's College...(page 16)

18 oktober Hans Knoop. ‘Interventions for chronic fatigue in chronic medical conditions and chronic fatigue syndrome: one size fits all? Invited speaker, King’s College London Seminar on Health Psychology, King’s College London, Guy’s Hospital, UK.

 

[lafarfelue]

Andrew Frank seems to believe that getting back into the workplace improves health outcomes "He talked about work not as an end product of recovery but as part of the process".

This review article he wrote seems mostly reasonable, if not a bit optimistic. But perhaps less relevant for many PwME who have more severe disability.

http://www.mdpi.com/2227-9032/4/3/46/pdf

Also, as notable counterpoint...
"Disabled people and professionals differ in their perceptions of rehabilitation needs." Kersten et al.
https://www.ncbi.nlm.nih.gov/pubmed/11077915

Thanks for posting these @Snow Leopard , I hadn't seen them yet. Useful, for a broader perspective on global approaches to 'rehabilitation'/ managing ME/CFS in the workplace.

Are we next going to hear about "alternative evidence" and "alternative science" as well as "alternative reasoning"? The media should stop using this term, and call it what it is - spin etc.

well, we do live in a 'post-truth' world now, so...

 

[Dolphin]

@Esther12 The report seemed one sided, pro CBT GET and vocational rehab.

A similar report could have been written about previous BACME conferences about which we have the agendas. She didn't necessarily leave important bits out. These conferences are for the staff who work in the British (mainly English) CFS/ME clinics which focus on CBT and GET.

 

[alex3619]

I have an inclination to change the spelling of bacme to something that uses the c but is more like **c*me conference.

 

[Dolphin]

One of the most memorable presentations was by 2 people who had been severely affected by CFS/ME. Both talked about the importance of having hope and being able to hold on to this idea from the beginning of their illness. Important factors in recovery included setting an activity baseline and planning small, realistic goals, gradual increases in activity and exercise, creating distraction from illness and the use of other therapies such as counselling, hypnotherapy, meditation and yoga. Both talked about the importance of health professionals accepting the methods they chose to manage their illness and recognised that taking personal responsibility for their own health condition was a crucial factor in making positive change. The speed of change was very slow for both patients, however, both have re-prioritised their lives with some incredible results. The talks left me thinking about how to carefully engender optimism in the patients we see with severe CFS/ME. There is very little evidence for treatment for people with severe CFS/ME so the recently produced shared clinical practice document for severely affected will be very helpful.

If the bolded part was said some more accepted conditions, such as diagnosed cancer (as opposed to preventing it), there would be a lot of scepticism but blaming CFS/ME patients for not getting better is seen as more acceptable.

 

[Dolphin]

Given all the mentions of recovery, I thought I would highlight this paper in case anyone is not aware of it.

Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial

Fatigue: Biomedicine, Health & Behavior

To link to this article: http://dx.doi.org/10.1080/21641846.2017.1259724


Carolyn Wilshire, Tom Kindlon, Alem Matthees and Simon McGrath


ABSTRACT


BACKGROUND: Publications from the PACE trial reported that 22% of chronic fatigue syndrome patients recovered following graded exercise therapy (GET), and 22% following a specialised form of CBT. Only 7% recovered in a control, no-therapy group. These figures were based on a definition of recovery that differed markedly from that specified in the trial protocol.


PURPOSE: To evaluate whether these recovery claims are justified by the evidence.


METHODS: Drawing on relevant normative data and other research, we critically examine the researchers’ definition of recovery, and whether the late changes they made to this definition were justified.

Finally, we calculate recovery rates based on the original protocol-specified definition.


RESULTS: None of the changes made to PACE recovery criteria were adequately justified. Further, the final definition was so lax that on some criteria, it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’. When recovery was defined according to the original protocol, recovery rates in the GET and CBT groups were low and not significantly higher than in the control group (4%, 7% and 3%, respectively).


CONCLUSIONS: The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.

The PACE trial included several such objective measures. These included a six-minute walking test and a step fitness test [2,38]. The researchers also recorded work days lost to illness in the period prior to, and in the 12 months following, treatment allocation [39]. Data for one of these measures was recently made publicly available: distance walked on the six-minute walking test. PACE’s CBT programme encouraged patients to overcome their fear of activity, and to also experiment with gradual increases in activity, so patients who recovered after CBT would be expected to score within the normal range on this test, especially after the passage of an entire year. The same would be expected for the GET programme, which set a goal of five exercise sessions a week, with walking being the most popular choice of exercise. We can estimate the normal range for this test from recently published norms based on a comparable version of this task (like PACE, it used a 10 m track length) [40]. Taking into account the PACE participants’ gender composition, average age and body mass index, and adopting the formula derived from the published norms, the lower bound of normal for this test is 589 m. None of the patients in the CBT, GET or Control groups who qualified as ‘recovered’ achieved a walking distance that approached this lower bound, even after a whole year – irrespective of whether the protocol-specified or the revised definition of recovery is used. Unfortunately, individual patient data for the other objective measures have not yet been made available, so we cannot evaluate how the ‘recovered’ patients fared on these. However, we do know that overall, treatment with CBT or GET did not have any significant effects on these other outcomes [2, 38,39].

 

[Kati]

Given all the mentions of recovery, I thought I would highlight this paper in case anyone is not aware of it.

Thanks for sharing this paper again @Dolphin, I tweeted about it just now
Did you or other authors receive any correspondance/comments associated to this paper?

 

[Jonathan Edwards]

"Both talked about the importance of health professionals accepting the methods they chose to manage their illness and recognised that taking personal responsibility for their own health condition was a crucial factor in making positive change. The speed of change was very slow for both patients, however, both have re-prioritised their lives with some incredible results."

If the bolded part was said some more accepted conditions, such as diagnosed cancer (as opposed to preventing it), there would be a lot of scepticism but blaming CFS/ME patients for not getting better is seen as more acceptable.

It is useful to see this sort of thinking aloud from professionals. It reveals that this really is a religious-style approach - if you believe, it will be true.

 

[trishrhymes]

'taking personal responsibility for their own health condition was a crucial factor in making positive change'.

It is useful to see this sort of thinking aloud from professionals. It reveals that this really is a religious-style approach - if you believe, it will be true.

see my blog:

http://forums.phoenixrising.me/index.php?entries/is-bps-bio-psycho-social-a-religion.2074/

 

[A.B.]

I'm just going to leave this here:

Psychosomatic Aspects of Peptic Ulcer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3803918/pdf/QBullNorthwestUnivMedSch-36-1-70_16.pdf

The precise circumstances responsible for the precipitation of peptic ulcers are as yet unknown. It now appears that there are three parameters which contribute to the development of a peptic ulcer: a physiological parameter; which involves tissue susceptibility, a psychological parameter which involves a relatively specific psychic conflict; and a social parameter, which revolves around a nonspecific environmental situation that requires adaptation to stress.

In other words, peptic ulcers are bio-psycho-social. I'm not sure when this was written. Judging from the references, probably in the 60's.

This branch of psychiatry seems to be nothing more than a parasite that feeds on poorly understood illnesses by claiming there are non-material aspects to the illness that only they can understand.

The psychological and social aspects that actually matter, like patients suffering from feeling invalidated and having their reality denied, or low research funding, are actually in part the result of this psychobabble.

 

[sarah darwins]

The precise circumstances responsible for the precipitation of peptic ulcers are as yet unknown. It now appears that there are three parameters which contribute to the development of a peptic ulcer: a physiological parameter; which involves tissue susceptibility, a psychological parameter which involves a relatively specific psychic conflict; and a social parameter, which revolves around a nonspecific environmental situation that requires adaptation to stress.

I read actual scientific papers and I know with certainty that there is no way I could ever write one. I read something churned out by the BPS brigade and I think "I could have written that ... in about 5 minutes".

They always remind me of the sort of essay I used to write overnight for my liberal arts degree when I hadn't bothered to do the required reading but needed to give my tutor the vague impression that I might have.

 

[Valentijn]

They always remind me of the sort of essay I used to write overnight for my liberal arts degree when I hadn't bothered to do the required reading but needed to give my tutor the vague impression that I might have.

Exactly. They are practicing philosophy, and it has nothing to do with science.

 

[trishrhymes]

Exactly. They are practicing philosophy, and it has nothing to do with science.

I know what you mean, but I suspect philosophers would argue that they don't recognise this nonsense either.
From what I understand of philosophy, logical argument and deduction are important parts of it.

These clowns wouldn't know a logical argument if they fell over one. Religion is closer, or just plain bullshit.