AFME - Association for Myalgic Encephalomyelitis website (not Action for ME)

[Hutan]

So, Dolphin's screenshot tells us that the domain name that belonged Action for ME (afme.org.uk) somehow was taken over by the "UK Public Health Association" which then posted a whole lot of BPS misinformation on it. And Action for ME ended up with a new domain name.

AfME members might like to find out the story behind that. And ask what steps have been taken to get that A(ssociation)fME website at least renamed so that people don't get confused.

 

[Andy]

AfME members might like to find out the story behind that.

My guess, someone at AfME didn't renew the domain name registration when they should have done and it was snapped up by this third party.

And ask what steps have been taken to get that A(ssociation)fME website at least renamed so that people don't get confused.

If someone is motivated enough to host BPS supporting material then a simple request from AfME is unlikely to produce results. And it is unlikely that the definition of criminal deception is met by this website, so AfME's only likely available recourse would be to take some sort of civil legal action, with the associated costs involved with that.

 

[Amw66]

My guess, someone at AfME didn't renew the domain name registration when they should have done and it was snapped up by this third party.


If someone is motivated enough to host BPS supporting material then a simple request from AfME is unlikely to produce results. And it is unlikely that the definition of criminal deception is met by this website, so AfME's only likely available recourse would be to take some sort of civil legal action, with the associated costs involved with that.

Copyright is another avenue.
If it's their previous copy/ photos etc then copyright challenge usually provokes a quick take down

 

[Amw66]

That website is registered to
"Mrs J Gilbert t/a Gilbert [Tag = UKPHA] URL: https://ukpha.org.uk"

That UKPHA website is an old one that doesn't look to have been updated for around 12 years.
"Welcome to the UK Public Health Association website

UKPHA is a unifying and powerful voice for the public's health and well being in the UK, focusing on the need to eliminate inequalities in health, promote sustainable development and combat anti-health forces.

The UK Public Health Association - known by the initials UKPHA - is an independent voluntary organisation, formed by the coming together of three organisations in 1999 to unite the public health movement in the UK.

As a multidisciplinary membership organisation, the UKPHA brings together individuals and organisations from all sectors who share a common commitment to promoting the public's health.

We seek to promote the development of healthy public policy at all levels of government and across all sectors. We act as an information platform and aim to support those working in public health both professionally and in a voluntary capacity."

Some well known faces from independent Sage
https://ukpha.org.uk/about-us/who-we-are.html

 

[CRG]

Some well known faces from independent Sage
https://ukpha.org.uk/about-us/who-we-are.html

This is a zombie org that exists only as website: UKPHA was dissolved as a Limited Company in 2015: https://find-and-update.company-information.service.gov.uk/company/03792931 and it had not filed accounts since 2010. It's "CEO" Angela Mawle died in 2017: https://www.funeralguide.co.uk/obituaries/31440

The domain owner appears to be a pilates teacher: https://www.bizseek.co.uk/jackie-gilbert-pilates-020-8207-2781 - the listed website http://www.bodyintuition.co.uk/ sets off a warning from my security software.

The domain history suggests Ms Gilbert picked up the UKPHA domain when the UKPHA was dissolved and is running her AFME creation on that domain while keeping the old UKPHA material online. Weird !

 

[Amw66]

This is a zombie org that exiists only as website: UKPHA was dissolved as a Limited Company in 2015: https://find-and-update.company-information.service.gov.uk/company/03792931 and it had not filed accounts since 2010. It's "CEO" Angela Mawle died in 2017: https://www.funeralguide.co.uk/obituaries/31440

The domain owner appears to be a pilates teacher: https://www.bizseek.co.uk/jackie-gilbert-pilates-020-8207-2781 - the listed website http://www.bodyintuition.co.uk/ sets off a warning from my security software.

The domain history suggests Ms Gilbert picked up the UKPHA domain when the UKPHA was dissolved and is running her AFME creation on that domain while keeping the old UKPHA material online. Weird !

Thanks for the detective work.
Weird and perhaps a bit concerning

 

[John Mac]

Thanks for the detective work.
Weird and perhaps a bit concerning

I think an organisation that had lost it's domain name and somebody else had gotten hold of it and was now using it to promote a view that was completely at odds with the organisation would be doing everything in it's powers to undo the damage being done.
They should have been contacting their members and everybody who had accessed the old site to inform them of their new address.
They should also have run a media campaign to highlight the problem to warn as many people as possible not to follow the information on the old site.
It appears they have done neither which is either because they are incompetent (which explains why they lost the domain name in the first place) or they just don't care that people are being given harmful information.
This is an organisation which had BPS proponents Alistair Miller and Esther Crawley as "medical" advisors so perhaps it's the second.

 

[CRG]

I think an organisation that had lost it's domain name and somebody else had gotten hold of it and was now using it to promote a view that was completely at odds with the organisation would be doing everything in it's powers to undo the damage being done.
They should have been contacting their members and everybody who had accessed the old site to inform them of their new address.
They should also have run a media campaign to highlight the problem to warn as many people as possible not to follow the information on the old site.
It appears they have done neither which is either because they are incompetent (which explains why they lost the domain name in the first place) or they just don't care that people are being given harmful information.
This is an organisation which had BPS proponents Alistair Miller and Esther Crawley as "medical" advisors so perhaps it's the second.

The problem with domain sitters is that the more fuss you make the more traffic that gets driven to the sat-on address. The only effective way (and it can be a long hard slog) is to work quietly with the hosting companies to ensure that ToS are being complied with and that should there be any contravention of ToS ensure the hosting contract is terminated. Of course it doesn't stop movement to other hosts but it tends shift the domain into the less well promoted zones.

I don't know why AfME gave up the domain but it had been operating solely as a re-direct (301) for several years before 2015 - https://web.archive.org/web/20120208103005/http://www.afme.org.uk/, they may simply have decided it wasn't worth hanging on to, not expecting someone to do a copycat/domain sit, after all there seems little traffic going the alternate site and no real purpose to it, it's not as if there's an actual scam involved and anyone wanting a real ME org is going to go back to the search results. I don't see the relevance of Miller and Crawley - this looks like a simple tech, SEO and budgeting decision which has turned out wrong - easy to be wise after the event.

I do think AfME should revisit the issue with the host if they haven't made any recent attempt but other than that there's little to be done.

 

[bobbler]

This is a zombie org that exists only as website: UKPHA was dissolved as a Limited Company in 2015: https://find-and-update.company-information.service.gov.uk/company/03792931 and it had not filed accounts since 2010. It's "CEO" Angela Mawle died in 2017: https://www.funeralguide.co.uk/obituaries/31440

The domain owner appears to be a pilates teacher: https://www.bizseek.co.uk/jackie-gilbert-pilates-020-8207-2781 - the listed website http://www.bodyintuition.co.uk/ sets off a warning from my security software.

The domain history suggests Ms Gilbert picked up the UKPHA domain when the UKPHA was dissolved and is running her AFME creation on that domain while keeping the old UKPHA material online. Weird !

Yes on at least one of these pages ('about us' but not 'who we are') these details of her are in the footer of the page, beneath the ukpha stuff