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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
this website
https://web.archive.org/web/20190914091905/http://www.afme.org.uk/

we discussed it at the other place and some people thought it might have been a student project or similar.
They are not a registered charity as far as I can find out.
There is no information as to who they are (although they say to contact them).

their info includes:

Treatment of ME depends greatly from patient to patient, depending on the type and severity of the symptoms. The most commonly prescribed treatments may include one or more of the following:
  • psychotherapy, most often in the form of cognitive behavioural therapy (CBT)
  • physical therapy known as graded therapy
  • pacing
  • pain relievers
  • antidepressants, sleeping pills
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their info on pacing:
There have been cases of full recovery but unfortunately, the majority of ME patients never recover completely. And this counts for those receiving treatment as well. The condition is more or less successfully managed with several therapies; which ones depends greatly on the symptoms and their severity. In most cases, ME management involves the use of a combination of multiple therapies and treatments. These often include cognitive behavioural therapy (CBT) and graded exercise (GET), both of which have been shown moderately effective when combined with specialist medical care (SMC). But in the recent years, ME management often also includes the so-called pacing which, according to patient survey, is helpful in over 80% of cases.
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any chance we can get this site amended or shut down?

Mod note: Direct links removed and replaced with archive link to cut traffic to scam site.
 
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I have had a quick look through the site. There are a lot of short sections on all sorts of aspects of ME that seem to be just one person's half understood waffle. No links to outside sources, no evidence to back statements, nothing useful at all.
 
NelliePledge said:
If nobody links to it and there’s no traffic it shouldn’t surface high on search
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thing is, years ago when I first came across it, it was the site that you were taken to for some of the links that were supposed to be to AfME.
If you do a basic search on Google for 'Action for ME' it comes up second on the list so it's possible that some of those links are still live. Am surprised, well no I'm not really, that AfME haven't done something about it.
 
It could be just a well meaning individual who has struggled to understand all the details of the problems around ME/CFS. It's easy for people who've been following this stuff closely just how confusing it can be for people who are relatively new to it.
 
This discussion has been moved from the News from Action for ME thread.

While trying to find out what had happened with the AfME Media Guidelines that were going though a consultation period last August/September, I visited the an AfME website. Has it changed recently? I was surprised at the way the organisation is presenting itself.

It's looking very basic.
web link removed to reduce traffic to the fake site.
Edited to add: It's a fake website.

Here's the home page:
Screen Shot 2022-12-30 at 10.38.22 am.png

"afme.org.uk is a free online resource about myalgic encephalomyelitis"

Is that really the most important thing to know about AfME - that it's a free online resource?

And the resources are really limited. I didn't find links to materials. And the content really had me amazed. I though AfMe had turned a corner, but the content on this website is, I think, a major u-turn.

See, for example this content about Pacing:
Information About Pacing
There have been cases of full recovery but unfortunately, the majority of ME patients never recover completely. And this counts for those receiving treatment as well. The condition is more or less successfully managed with several therapies; which ones depends greatly on the symptoms and their severity. In most cases, ME management involves the use of a combination of multiple therapies and treatments. These often include cognitive behavioural therapy (CBT) and graded exercise (GET), both of which have been shown moderately effective when combined with specialist medical care (SMC). But in the recent years, ME management often also includes the so-called pacing which, according to patient survey, is helpful in over 80% of cases.
Click to expand...

What is Pacing?
Pacing is a form of ME therapy which foresees increasing both physical and mental activity in a way to avoid worsening of the condition’s symptoms. Unlike CBT, pacing takes into account the periodic improvement and worsening of ME symptoms as well as a significant delay in recovery from exercise in comparison to healthy individuals. The therapy is based on setting realistic and manageable intensity and duration of activity which is carefully balanced with the rest period in order to prevent worsening of the symptoms. Duration and intensity of activity are increased gradually over a longer period of time with an aim to improve the patient’s physical and mental functioning in the long term.
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That's not Pacing. "which foresees increasing both physical and mental activity in away to avoid worsening of the conditions symptoms"
"During and intensity of activity are increased gradually over a period of time with the aim to improve the patient's physical and mental functioning in the long term."

To call me gobsmacked is an understatement. Is this a fake AfME website, or what? Edit - yes it is a fake website

Under the heading "What did the PACE Trial find?"
Advocacy groups almost unanimously agree that the most important thing the PACE trial has found is the need for further research to make the available treatments more effective and hopefully, find a cure. But what did the PACE trial actually find?

The authors of the PACE trial, which included 600 participants, concluded that of four ME treatments they studied only CBT and GET were found to be effective to a certain degree when combined with SMC as opposed to SMC alone. ATP, on the other hand, didn’t have any effect when used in combination with SMC.
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Criticism of the PACE Trial
In addition to failing to bring us any closer to finding more effective and safer treatments for ME, the PACE trial has also been heavily criticised for focusing almost exclusively on fatigue while ignoring other symptoms including pain. Also, the participants were asked to rate the improvement of fatigue and mobility/physical function instead of rating the overall improvement, which according to some, made the studied treatments appear more effective than they in reality are.

The trial also received a lot of criticism for failing to include patients who are unable to leave their home and those younger than 18 years. Lastly, the findings are based on the participants’ observations which raises the question about the result’s reliability.
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Seriously?

There are no contact details, the language is pretty poor. It looks really suspicious.

I have now re-found the proper AfME website
https://www.actionforme.org.uk

I think AfME need to do something about the website that is pretending to be them.
 
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AfME's section about the PACE trial on their real website is still not ideal:
The PACE trial
The results of a large-scale study published in 2011, of adaptive pacing therapy, GET and CBT, called the PACE trial, found that some people with mild or moderate M.E. experienced a small degree of improvement after undertaking CBT and GET, and no significant improvement after adaptive pacing therapy.

However, the PACE trial was based on a flawed hypothesis that M.E. “was largely being maintained by abnormal illness beliefs and behaviours, along with inactivity and deconditioning” (Shepherd, 2017). Repeated questions have been raised about the methodology of this trial, and the reliability of its results, including potential harm caused by GET.
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The main problem with PACE is not that it was based on a flawed hypothesis. It was that it was so poorly designed that the data it produced cannot constitute reliable evidence for any treatment being helpful. I don't think it's right to focus on 'repeated questions about the methodology'. We know the answers to such questions - and that is that the PACE trial had a hopelessly flawed methodology, as do pretty much all the BPS treatment trials.
 
Hutan said:
While trying to find out what had happened with the AfME Media Guidelines that were going though a consultation period last August/September, I visited the an AfME website. Has it changed recently? I was surprised at the way the organisation is presenting itself.

It's looking very basic.
https://www.afme.org.uk/index.html
Edited to add: It's a fake website.

Here's the home page:
View attachment 18801

"afme.org.uk is a free online resource about myalgic encephalomyelitis"

Is that really the most important thing to know about AfME - that it's a free online resource?

And the resources are really limited. I didn't find links to materials. And the content really had me amazed. I though AfMe had turned a corner, but the content on this website is, I think, a major u-turn.

See, for example this content about Pacing:




That's not Pacing. "which foresees increasing both physical and mental activity in away to avoid worsening of the conditions symptoms"
"During and intensity of activity are increased gradually over a period of time with the aim to improve the patient's physical and mental functioning in the long term."

To call me gobsmacked is an understatement. Is this a fake AfME website, or what? Edit - yes it is a fake website

Under the heading "What did the PACE Trial find?"



Seriously?

There are no contact details, the language is pretty poor. It looks really suspicious.

I have now re-found the proper AfME website
https://www.actionforme.org.uk

I think AfME need to do something about the website that is pretending to be them.
Click to expand...
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."
 
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