1. Less than a week to support David Tuller's work. To donate click here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 19th October 2020 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Open Letters and Replies' started by Trish, Jan 12, 2019.

  1. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    6,107
    Likes Received:
    40,136
    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.
     
    MSEsperanza likes this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,336
    Likes Received:
    39,253
    Location:
    UK West Midlands
    Seems like some folks from other ME organisations have stepped back from interacting here too.
     
    Barry and Trish like this.
  3. Adrian

    Adrian Administrator Staff Member

    Messages:
    4,782
    Likes Received:
    24,224
    Location:
    UK
    They are a member
    https://www.s4me.info/members/action-for-m-e.819/

    You can tag them
    @Action for M.E.

    But they do not come up in the suggestions for search (or user mentions/tags) since they have not logged in for 6 months and so the forum software ignores them.

    You can search for them but the dots in M.E. mean that a simple search for Action for ME doesn't find a match
     
    Barry, Annamaria, JaneL and 4 others like this.
  4. large donner

    large donner Guest

    Messages:
    1,214
    Likes Received:
    9,242
    Maybe more to do with being involved in the NICE review than the reason AfME don't answer questions here anymore.
     
    Last edited: Oct 14, 2019
    ukxmrv likes this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,336
    Likes Received:
    39,253
    Location:
    UK West Midlands
    Fair enough @phil_in_bristol but 15 months to address the pacing booklet means meanwhile no doubt quite a number of people will have taken on board the approach in the old version. Which could quite easily have been addressed by taking it down until the new one was available. Not a strong position from which to criticise the NICE stance.
     
    Binkie4, Nellie, MeSci and 11 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,173
    Likes Received:
    42,958
    Location:
    UK
    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.
     
    Simbindi, Binkie4, MeSci and 10 others like this.
  7. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    3,004
    Likes Received:
    20,524
    I understand that next years conference will include discussion on "How to win friends and influence people".
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,336
    Likes Received:
    39,253
    Location:
    UK West Midlands
    Dear @phil_in_bristol i used to work on web content for a public sector organisation I know how long it takes to get documents updated and it depends on the urgency given to the work. A forum is a place for expressing and exchanging views. I’m no longer a member of AFME since I realised their documents which I took my main steer from were a major contributory factor in me pushing to get back to work on a phased return just a few weeks after finally getting CFS diagnosis. That’s the basis for my opinion on this particular issue. If the replacement booklet is an improvement I will give credit. As I have done for getting the advocacy service pilot going. Had my personal situation been different I may well have contacted AFME to offer to contribute. But I’ve had to prioritise other things.
     
    phil_in_bristol, MeSci, Barry and 3 others like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    26,566
    Likes Received:
    130,323
    Location:
    UK
    Dear @phil_in_bristol. I appreciate that you are doing your best as a trustee of Action for ME, and are keen to defend their actions. And I appreciate that the people running AfME and employed by it are working hard and doing what they think is best to help people with ME.

    I don't agree that we have an agenda here. We are sick people who have been ill served by AfME for many, many years. Some of us took AfME's advice and were harmed by it. Some of that advice is still in AfME's materials. Is it so surprising that we are critical?

    And we are individuals who will each react in our own way when we see what seems to us astonishing tardiness by AfME in sorting out its materials it provides for patients.

    I look forward to reading the new version of the Pacing document.

    It would have been perfectly possible for AfME to withdraw the current version as soon as you realised it was not satisfactory. A brief (one page) replacement document describing pacing could have been provided in the meantime, or an addendum added to the document pointing out the misinformation in it.

    The fact that this was not done tells me the organisation is stlll too slow to act, when they realise they have something wrong. That means hundreds more patients will have been following faulty advice. Does that not concern the staff and trustees of AfME?

    I have just noticed you have posted that you will not be responding any more. That is your choice, but it seems a pity that, instead of engaging with the substance of our concerns, you have decided we are all against you.

    Surely a trustee of an organisation working to help sick people would be keen to know whether there are concerns among some of the patient community, and be keen to take those concerns back to the organisation to try to help the organisation serve the community better.

    When I wrote to AfME back in January about the Toolkit for Professionals, you were supportive of that action, but it took the actions of others with more clout than me to get AfME to act to withdraw it. It should not need such pressure for AfME to recognise the harm faulty materials are doing every day to patients. So I'm sorry, while AfME still publishes on its website bad advice, you can hardly be surprised we go on criticising.

    I watched the conference yesterday. There was much to commend, particularly the work helping individuals with advocacy and mentoring and telephone advice. That is clearly a valuable service. I can't comment on the work at national and international level, as very little was revealed about the details.

    If you want to do something really helpful to support us, perhaps you could ask AfME to make available to patients the training modules, webinars etc. you provide for doctors and therapists, so we can review these and give some feedback.
     
    Kalliope, Simbindi, Hutan and 13 others like this.
  10. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,768
    Likes Received:
    30,770
    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.
     
    Simbindi, Hutan, Binkie4 and 10 others like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    7,587
    Likes Received:
    77,929
    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.
     
    rainy, feeb, Hutan and 23 others like this.
  12. Willow

    Willow Established Member (Voting Rights)

    Messages:
    39
    Likes Received:
    441
    Location:
    Midwest, USA
    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.
     
    rainy, JaneL, Hutan and 13 others like this.
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,173
    Likes Received:
    42,958
    Location:
    UK
    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.
     
    JaneL, Hutan, Binkie4 and 6 others like this.
  14. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    2,334
    Likes Received:
    14,253
    Location:
    Cornwall, UK
    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.
     
  15. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,336
    Likes Received:
    39,253
    Location:
    UK West Midlands
    Ok Phil. I don’t want to be too dogged on this point but even in a situation where resources are overstretched a quick interim fix can be done without needing much resource that mitigates issues in advance of the full replacement.
     
    JaneL, MeSci, phil_in_bristol and 2 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,336
    Likes Received:
    39,253
    Location:
    UK West Midlands
    I’m supportive of actions I think deserve support and prepared to criticise those I don’t. I do have criticisms of those other organisations too which I have voiced on here. I’m a member of ME Association and have organised Millions Missing in my local city. I’ve donated to IIME too. I was hoping to go to their conference in 2017 but wasn’t well enough. I’ve had to take ill health retirement from work. Im not housebound unless I’m having a bad PEM spell Being on this forum in particular and my local ME Facebook group are a big part of my life. This forum has a lot to offer to people with ME and it’s great to be able to engage with Dave T and other advocates.
     
    Last edited by a moderator: Oct 18, 2019
    Annamaria, JaneL, Hutan and 4 others like this.
  17. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    1,514
    Likes Received:
    9,070
    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.
     
    Last edited: Oct 17, 2019
  18. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,336
    Likes Received:
    39,253
    Location:
    UK West Midlands
    I’ve been justifiably critical of AFME based on my own experience as a user of their documents Marge I’m not hostile to Phil. I hope everyone realises that
     
    ladycatlover, Lisa108, MeSci and 10 others like this.
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    7,587
    Likes Received:
    77,929
    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.
     
  20. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    1,514
    Likes Received:
    9,070
    Apologies @NelliePledge, my comment came across too strong.
     
    ladycatlover, Hutan, JaneL and 3 others like this.

Share This Page