United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

CFS/ME National
Services Survey Feb 2018
Snap shot audit
BACME
National Services Workstream Report
Published March 2019
https://www.bacme.info/sites/bacme.info/files/BACME CFS ME National services survey March19.pdf

 

Bacme

British Association for CFS/ME

2020 Conference

Creative Approaches in CFS/ME Services

Exploring evidence-based interventions for working with CFS/ME

Wednesday May 20th 2020

Burton Hospital Education Centre

https://www.bacme.info/civicrm/event/info?id=4
https://www.bacme.info/upcoming-events

program:
https://www.bacme.info/civicrm/file...7ac0a46dfbb9f245e3873b3b510086_1580059536_168

eta:
Overview of research & CMRC Conference March 2020
Peter Gladwell & Dr Vikki McKeever

(Peter Gladwell : see AfME 'new' pacing leaflet)

 

???

That's gotta be taking the p.......!

Creative approaches indeed. As if they didn't just make it up as they go along anyway.

 

Is anyone who is a member of BACME a member here on S4ME? If not why not, since this is the premier forum for discussing evidence based treatments?

I checked out one of the speakers:

About

I have spent over 20 years working as an Occupational Therapist in the NHS, helping people maximise their potential. Working closely with Chronic Fatigue patients I have found that managing energy levels and working on the positive aspects of life have created great returns for my patients. I have also honed my approach - believing that everyone has the answer inside, sometimes it takes good questioning to uncover the answers and developing a good questioning technique has proved invaluable.
In the summer of 2014 I joined Vitality360 expanding my skills within CFS/ME and persistent pain to now include close working with insurance companies and with a greater emphasis on helping individuals to return to work.
Developing skills even further has enabled me to incorporate life coaching and NLP within my NHS work and I have found that these skills are equally appropriate to the business environment. I have also explored the use of Mindfulness techniques on a personal and professional basis, believing that this is an invaluable tool in today's busy world.
I have developed short, fun, interactive workshops that can be used in any team setting. Using some accelerated learning techniques gives each individual an opportunity for experiential learning. Topics centre around the importance of effective communication and other 'soft skills'.

On an individual level I have had an opportunity to coach individuals in a variety of settings.


That ticks all the wrong boxes for me I am afraid.
It is a million miles away from evidence based medicine in the valid sense.

A therapist recently made the comment out of earshot with reference to me that 'He thinks we are stupid'. I am afraid I have to, if this is the sort of level therapists think is worthy of an annual general meeting.

The difficult question is why my medical colleagues think that handing patients over to these people is ethical. Maybe they don't . They just think it gets hassle out of the way.

 

Another CV below. Who are Vitality360 then? If anyone has reason to think they are not commercial quackery I would be interested to hear.

 

Remember Jessica Bavington?

https://vitality360.co.uk/about-us

Edit - yep it's all about rehabilitation.

 

She played an important role in PACE, and offered some shit attempts to defend it that showed she really had no idea what she was talking about.

Here's one of the threads she posted in, but I can't remember which of them are particularly damning: https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557&start=30

 

Clever language but engaging in more activities doesn't mean that you haven't just spread yourself out over more activities without actually just spending the same time overall on all combined activities.

Also whats the point if you have to limit the time spent on crucial activities of daily living to do some "exercises"?

 

This sounds to me like a group of very serious Kool-aid drinkers. They have completely embraced corporate culture and think they are serving the chronically ill. All of the multi-disciplinary skill sets they are acquiring are really about their own perfection (or so the blather sounds to me).

Look what I can do. I am a miracle of modern healing. so many skills, so little time. But I'm a time efficiency expert too. And on and on. Their eagerness and positivity about all the things they bring to the table I think blinds them to any real clear ability to actually evaluate their prey.

And after 30 odd years of this type of intervention they are discovering (or possibly even inventing) therapy with a compassion element embedded in it. I can't wait to see what compassionate bullying looks like.

 

We have based our interventions to date on this original research andour experience tells us that they work. However, these Interventions have been embedded at Vitality360 within a multidisciplinary approach and not used in isolation.

What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment.



This sort of talk should be open to legal challenge. It is either fraud or incompetence.
As I pointed out at the NICE committee, it is completely impossible for therapists to know that their treatment works without controlled trial evidence. The effects documented in PACE are FAR TOO SMALL.

Individualisation means the opposite of evidence based treatment. It means doing whatever you fancy. Yes, I do think these people are stupid. They leave me with no alternative.

 

I think you've hit the nail on the head as usual.
Local GP trainees in their 3rd year are just being taught the difference between false positives and false negatives. I learned this as a second year student.
I'm also really fed up with " qualitative thematic analysis" . A fancy name for a survey.

 

Apparently they have been dropped by some insurance companies that they had been contracted to.

One can only assume that is both for commercial and legal reasons, due to both lack of efficacy and liability generation.

 

Ah, yes, "creative" approaches. Really do leave it to people who focus on the least relevant and most trivial aspects of a disease to find the least relevant and most trivial approach imaginable. Creative approaches to research? Sure. Creative approach to clinical services? Are you literally insane?

You have to marvel at the doublethink in PACE being a central piece of research but also not that important because anecdotes. Literally the main feature of pseudoscience everywhere, that there may not be research showing any evidence but they personally believe it works. This is malpractice, it is the opposite of evidence-based and something that does not belong anywhere near medicine. At some point there must be some legal remedy to this blatantly unethical nonsense.

Take your "creativity" and shove it where the IBS shines. Zero difference between this and an astrology conference.

 

Imagine what it's like being very unwell and being talked at by them. Over and over again.


The following quote by Jessica Bavinton, taken from this link that Esther provides above, perhaps gives some insight into the type of Kafkaesque nightmare that patients have to endure:

"We shouldn't trust research telling us the cure lies in eating lots of tomatoes if it's sponsored by the tomato producers" but you should definitely trust research which claims that CBT/GET can cure ME/CFS when it's conducted and promoted by people who sell CBT/GET - especially when it's criticised by numerous independent scientists and contradicts your own experience.

 

They're part of Prudential. I had to take life insurance when I bought my house, and I (sadly) receive their magazine every now and then.

You get discounts on your health insurance if you get annual check-ups, record all your food and use a step counter to track activity (all of which they see to adjudicate how 'good' you are).

 

Therapist; heal thyself.