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

And yet not so long ago BACME supposedly signed this:
https://www.s4me.info/threads/iafme...and-respect-an-agenda-for-change-in-m-e.7049/


eta: btw I don't need any more 'I told you so' t-shirts

 

they have their own forum on their website but it's members only; in fact most things on their site are only accessible by members.

 

Oh wow that's seriously invasive.

There was a pretty big controversy a few years ago here in Quebec after an insurer offered rebates to drivers who installed a monitor that checked for erratic driving and other risky behavior. It only recorded driving speed, breaking and such. And even that was considered excessively invasive and few opted for it.

Recording all your food, using step counters and giving that information to insurers? Wow that would not fly here at all.

But, yet again, we see the involvement of insurers into efforts that are specifically built to save them billions. I have no idea why that corrosive influence is allowed and unchallenged, it is as toxic, if not more, than the influence of pharmaceuticals.

 

That doesn't stop them from joining a proper website like this one.

 

Hi there, vitality 360 are not part of the Pru, but contracted to them (unless the Pru did buy them, which I doubt for commercial reasons but haven't rechecked).

Other insurers also contracted v360 too and some also mentioned them in their own press releases and marketing/comms to policy holders, including for employers' bulk policies offered as benefits for employees e.g. medium/long term disability insurance.

My detailed and specific understanding is that the industry now actively manages who they 'encourage' into such programmes. If they smell a beneficiary's/patient's awareness of the actual definition of 'evidence based treatments' in ME, many insurers will now not take the risk (their risk, not the beneficiary's...). If there is ignorance on the patient's part (common due to the reasonable expectation of outsourcing knowledge to medical norms), some insurers will still very strongly offer such services (at least until 9 months ago). This depends on the individual insurer's awareness of the separate legal and ongoing claim risks from harm.

 

"Vitality 360, we spin you right round, like a record player", until you're dizzy and throw up"

 

I mean, you earn points by doing so, and get discounted gym membership! Who doesn't want to give all that data for cheaper gyms?!

Sounds about right.

Do you mean they won't insure you if you have ME, or they'll stop telling you to exercise if you know about the harmful effects of GET in advance?

 

Sorry, I was ambiguous. I meant that it is now increasingly possible (not definite or even clear how likely) that an insurer will rapidly pull back from pushing BPS rubbish or stop telling you to get exercise eventually. Some will still push you towards Vitality 360 or other quackery, or look for it on medical records for the purposes of claim management.

It's an evolving mixture of awareness and opportunism, governed by how enlightened an insurer's own self-interest is. Their advisors and claims management nurses are medical professionals and not scientific professionals, hence captives of the ME specific digression medicine has take away from science.

What are the variables that determine the insurer's approach?

1. Ostensibly, NICE guidance was the legal cover for pushing in the UK. But given that recentish NICE clarification that patient choice exists and that the clarification came in the context of the NICE review, pushing 2007 guidance hard against someone's will is problematic. This pro-pwme point was always legally makeable, just simpler now and the implications more immediate.
   
2. The medics involved and on the beneficiary's medical records. Some are more likely to be medics an insurer would prefer not to mess with in a legal setting, in extremis. This is also important to avoid public precedent.....
   
3. How clearly the patient is aware of the science Vs medical norms. And how legally informed they appear - this in particular is a 'smell test'. The implications are similar to pt 2
   
4. To what extent a specific insurer has internal momentum/careers that still negatively influence trajectory Vs ME.

These are all in the context of each other, and don't actually paint a rosy picture, as they assume a lot... Most people will not line up that well on the middle two points until later in their illness, if ever. It's just a different version of nasty, with some glimmers of hope being injected in by context.

Bear in mind I'm referring to the claim management stage. Determining actual cover is at the application stage and is policy applicant/holder specific.

• If the applicant and policy holder is the beneficiary, it is individually underwritten for a person or persons.
  
• If the policy holder is an employer, it is underwritten for a group, a statistical sample, and not individually.

It also depends which policy. It many countries to exclude ME explicitly from some form of disability insurance would likely be unlawfully discriminatory. But critical illness insurance, for example, is largely based on inclusions with exceptions instead. And ME is very specifically not included normally.

Apologies for typos and logic burps. I can correct if anyone sees something weird

 

Gotcha. That makes perfect sense. Hopefully the new guideline will help with this, too.

 

Definitely.

 

People are already doing it. Its called facebook.

 

Ha! Yeah, well that was before Facebook became really huge. It was already growing fast but mostly with young people. Given how much people now willingly share for no actual reason, maybe it wouldn't even be that controversial today.

I'm sure Facebook already sells this data to insurers anyway so it's just the same in the end. Which is also why I deleted my Facebook account years ago.

It will be weird getting back to normal life. Most people will have generated a serious amount of data by simply existing. In our cases it will be mostly a black hole of no information, as if we had dropped out of society (ha! as if) entirely and had simply gone missing all those years. "How did you not exist for all those years?!" will be quite the puzzle.

Which actually makes me think that this is likely a good way to identify the chronically ill, but that would take extremely invasive mass of personal information. Probably something that invasive surveillance societies can already do...

 

Post-Viral Fatigue
A Guide to Management
May 2020
https://www.bacme.info/sites/bacme.info/files/BACME Post Viral Fatigue A Guide to Management May2020.pdf

 

Way too much emphasis on fatigue. This will confuse a lot of people unnecessarily. I completely dismissed CFS for years because of this, the obsession with fatigue at the exclusion of everything else is rank incompetence. In fact I see a lot of comments from longish-term COVID patients reflecting exactly on this, to the effect of: when does the post-viral fatigue kick in? Not realizing that PVFS means you just remain ill, rather than it being a different phase, and how it doesn't explain the 90%+ of the rest of the disease and all the damn neurological symptoms and pain.

Not sure why they even bothered, much better advice has already been published and this organization has no credibility outside of the BPS circle jerk. Could be worse, even better would be to just stay home and leave things to people who are willing and able to help.

 

interesting that this is what they say for 'post-viral fatigue' and yet when it comes to 'Chronic fatigue' the increase is 20% a week.

rings a bell.......

"Professor Trudie Chalder is researching into what we can we learn from acceptance and commitment therapy in relation to COVID-19."
https://www.s4me.info/threads/covid-19-psychological-research-and-treatment.14419/page-3#post-260454

 

This conference was cancelled.
Probably just as well given the apparent about turn (see BACME statement).

I only just found this:
https://vrassociationuk.com/resources/demystifying-cfs-jessica-bavinton-vitality360/
recording only available for members.

It's a webinar Jessica Bavinton did for the VRA in 2015.
It was discussed on PR and there is a link to an unofficial recording.
https://forums.phoenixrising.me/thr...nton-recording-of-october-2015-webinar.50119/

the link is:
https://www.dropbox.com/s/bjwqnhxufqn2uvo/Bavinton VRA webinar.flv?dl=0

I'm only half way through; after selling the virtues of GET, the slide at around 29m shows the things that are not recommended;


so what is BACMEs position on this now I wonder?

eta: at the time of this webinar JB was vice-chair of BACME, I don't know what her position in BACME is now.
eta2: note Lightning Process is on the list.
eta3: haha just spotted it actually says 'lightening process'........bleach anyone?