Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

Yes, I've noticed there are some member tags that do not auto-complete or come up in a search, yet seem to still be valid members nonetheless. AfME are @Action for M.E., though I don't think they have interacted here for quite some while.

 

Maybe more to do with being involved in the NICE review than the reason AfME don't answer questions here anymore.

 

I'm sorry you find it tiresome.

I'm sure AfME and their former allies found @dave30th and others persistant criticism of PACE very tiresome, and you have to admit that it has taken AfME a long time to come around to accepting that supporting the trial and all that it stood for was a bad idea.
But their statement should have been swiftly followed by amending all their literature, and webinars etc to reflect their change in position along with unambiguous condemnation of all the other issues surrounding bPS research on ME and CFS including Esther Crawleys research in particular SMILE, MAGENTA and FITNET-NHS.

Action should speak louder than words.

 

I understand that next years conference will include discussion on "How to win friends and influence people".

 

To be fair, I know some people who put a lot of time and effort into trying to get AfME to improve when Sonya first came onboard, and most of them seemed to come away thinking that it was only public pressure that was of any value as AfME have in-built problems which meant that the truth didn't particularly matter. Since then there have been some signs of improvement, but other signs of on-going problems.

Also, AfME were not challenging PACE since 2011. And certainly not in any competent manner. It took a lot of effort to make even the still soft criticism that they have made so far.

I'm grateful for anyone within AfME who is trying to improve things, and can see that you might feel it's unfair if you're being lumped in with criticism of the way they work, though I haven't actually seen anyone do that. Some people will be more critical than is fair, some not critical enough, but I don't think it's right to say that AfME will get criticised here whatever they will do - unfortunately they keep doing things that warrant criticism though. I certainly wish that wasn't the case.

In 2013 Sonya was welcoming NIHR funding for Esther Crawley. If AfME had been actively speaking out in opposition to NIHR directing funding to Crawley we'd probably be in a better position now, as it is Crawley was able to present herself to NIHR as a champion of patients. I just went back to re-read some of the comments from that time and 'frustrating' is really an understatement. AfME's wor with O'Dowd is another absurdity.

You have to admit that AfME has given us good reason for concern over the years.

 

Dear @phil_in_bristol,

I understand your commitment and desire to help. However, 'it wouldn't look good' is never a reason to misinform is it? Keeping up appearances isn't what care is about. Real care is saying 'sorry but we have realised that our information is not as helpful as it should be, please wait for a new version'.

I don't think there is any agenda on S4ME except being honest and trying to get things right. It is quite different from other forums in that respect, I suspect. That can be tough but it is the only way to get things sorted.

The more I see of the ME world the more I realise just how dreadful professional colleagues' behaviour has been. If I have any reservations about patient members' critiques here it is that they are only chipping at the edges of much greater incompetence than they imagined.

 

Thank you @Jonathan Edwards for the honesty and straightforwardness of your above statement. Your words are chilling to the bone when their reality is contemplated. But they also give hope in that change cannot happen until the sentiments expressed are brought to light and sink into the consciousness of all involved. I am grateful for your stance on ME and for your understanding of all that patients have endured over the past thirty years. You are a very cherished advocate, and I thank you.

 

AfME head of Childrens services MJW, formerly head of AYME who were the patient body affliliated with Crawleys research. (and BACME) . Interviewed on TV and on radio giving her support for Crawleys research (eg 1 Nov 2016 BBC Victoria Derbyshire program openly opposing Jane Colby of Tymes Trust concerns).

As a former longtime member and supporter of AfME I did contact them when the reanalysis of the PACE trial was done (must be about 3 or 4 years ago) re their leaflet on pacing and they said they would be reviewing it.

Others have also tried on various issues; threads here and on Phoenix Rising and all over twitter/FB and say they get blocked if they raise any kind of objection/criticism.

The biggest problem is the issue of trust. When I first encountered negativity towards AfME I was shocked. I had been totally unaware of their role as quislings in the 'bPS takeover' and had believed that what they were doing must be in the best interest of pwME, after all they were an ME charity.

AfME appear to be making an effort to change and rectify their mistakes of the past. But until they really listen to concerns rather than just seeing them as criticism (as certain authors of a particular trial do) and understand the fundamental issues behind the concerns, then they will not win back that trust from the community as a whole.

 

from https://www.s4me.info/threads/rethi...l-of-graded-exercise-and-cbt.2282/#post-41444

I wrote this to AfME on 14th March 2011 (please excuse errors):

"Dear AfME,

I am just skim-read your article about the PACE study on page 4 of the Spring issue of InterAction, and hope that your scientists will be producing a detailed critique of the study.

A very quick look at the main study paper reveals a number of areas which merit question. For example, an overwhelming proportion of people initially approached to participate were excluded, and the expectations of those who did participate appear highly atypical, but concur closely with outcomes. The study sample may have been an overly self-selected sub-group. It is likely, for example, to have excluded people who have previously tried GET and experienced adverse effects, as in your own studies.

Unfortunately I cannot spare the time to analyse the study thoroughly myself without remuneration, being a sufferer myself who is struggling to make ends meet and suffers severe adverse effects from over-exertion.

Regards,"

That was before my more-recent worsenings. I don't think there was any answer in the magazine; I certainly did not receive any answer myself.

 

I was pleased to attend the conference yesterday and felt encouraged in several ways, which I will expand on later.

I do feel that the attitude has changed within the last 3 years, that I have been attending. (Not only due to me being there!!)

There is a huge distrust of the charity among many PwME, due to actions in the past, combined with a reluctance to retract poor literature/react instantly to our suggestions.

I do not want to minimise the hurt and damage this has caused, especially to those who have been ill for longer and/or more severely than my daughter or friends with ME.

It is understandable that AfME may feel that defending themselves here is not an effective use of their resources. As with Trish's letter, and subsequent responses we have seen, that there are better ways of communicating, in a less combative manner.

(This does not mean that ranting about injustice/general frustrations must be stopped. The forum is a great place to say what you really feel, amongst people who really get ME.)

Once I have clicked post I will retire to my bunker.

 

Absolutely. I was not aware of any hostility to Phil in recent posts. The truth needs to be spelled out but I have not seen anyone being personally unreasonable or hostile.

 

Apologies @NelliePledge, my comment came across too strong.