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.
