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

Nice to see them expressing enormous gratitude to those who reviewed the toolkit. Now that we've reviewed it I wonder if they'll be expressing the same enormous gratitude towards us? Unless "reviewing" in the AfME world just means nodding and saying "yes, that's great".

 

There is also an "Employers' guide to ME" booklet;

https://www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

I am just beginning to skim this...

Also:

https://www.actionforme.org.uk/uploads/pdfs/me-and-work-2016.pdf

These both seem to be based on the SEE ME project and include the same acknowledgements and grateful thanks at the end to:

• all those in our Patient and Carer Reference Group who reviewed this booklet.

 

Once again, AfME completely misrepresent pwME. Still no mention of severity between 'mild' and 'severe', and again 'some people' for severe (although I think there is a mention of the 25%).
No mention that 5% are very severe either.

Just to remind AfME that as things stand with the NICE guidelines (which AfME appear to be using);
ME/CFS is currently split into three severities. Mild, Moderate, and Severe.

The NICE definition of Moderate is pretty rubbish as it only seems to acknowledge mobility problems:

All the other symptoms and problems still apply and I would expect AfME to not only know that but to impart that information to others.

By failing to explain that a large number of people fall between what is considered 'mild' and 'severe'
they are not presenting the full picture about ME.

Nor do they make it clear that someone who is 'mild' can get worse, and become 'moderate', or 'moderate' may become 'severe'. Or that the 'fluctuations' can go across severity levels.

__________

eta: I have been trying to find some statistics, so far I have only found this:

"Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or fulltime, while reducing other activities.

About 50 per cent will have a moderate to severe form of ME/CFS and not be able to get to school or work.

Another 25 per cent will experience severe ME/CFS and have to stay at home or in bed."

so that's 75% people with ME unable to work or go to school.......not just 'some'.

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
I can't vouch for the accuracy of these figures; I shall keep looking

 

I am posting for the first time in a number of months, and would like to apologise for my absence from the forum. I have had some capacity issues in my team which forced me to be very strict about what I could and couldn't do. I realise it would have been helpful to come on here and say this, and I'm sorry for the radio silence.

I intend to spend one hour each week from now on addressing questions and feedback about Action for M.E.'s work. This may be less frequent during busy times, such as the run up to M.E. Awareness Month.

I will start by answering questions posted in this thread, please bear with me.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

Our Patient and Carer Reference Group was set up a few years ago, and we recruited by posting a news story about this on our website and social media. It has no links to any NHS services.

Anyone with M.E. or someone who is a carer for a close family member with M.E. was invited to join, providing a broad cross-section of people closely affected by M.E. and expertise. For practical reasons, there will be no more than 50 members at any one time.

The purpose of the group, which operates virtually, is to provide an opportunity for people with M.E. and their carers to collaborate with and influence Action for M.E.’s work. We have agreed that we will not share any information about individual members with anyone outside of the organisation.

Since its inception, the group has inputted into the our organisational strategy, our information and support publications, and some of our awareness-raising campaigns.

We currently not recruiting for the group but will review this in due course and I will post on here if opportunities to join become available.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

We do not support M.E. as being suitable for treatment under IAPT. While there's a place for talking therapy, if a patient chooses, to address mental health issues arising as a consequence of living with a long-term condition, it must never replace appropriate medical care for that condition.

We highlight our concerns with MUS on our website and this will be updated to also include reference to the IAPT programme.

The Countess of Mar has made numerous attempts to invite IAPT leads within the government and NHS to meet with Forward M.E. so we can share our concerns. Her invitations have been declined, so we will be considering our next move when we meet again, the NICE survey having more recently taken priority.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

I fully agree with this @Action for M.E., as will most other people here I think. As I am only too well aware, there is a major difference between gaining knowledge versus gaining insights. The former can take real endeavour, but the latter needs much more - stepping back and opening heart and mind to things being different to how one has always believed them to be. As @Trish says, DWP assessments are a nightmare for PwME, as they invariably don't believe in the reality of ME being an intractable condition. Giving the DWP the impression that AfME is fully qualified to promote this toolkit in the form it is, is all they need to make life even more hellish than it is for PwME. Please step back and try to fully appreciate this. Thank you.

 

What can I add? You have said it all, clearly and eloquently. I really don't think that people in general fully appreciate the nightmare that applying for benefits is for people with ME. I'm in the same position as Trish: I dread to think what will happen to my son when we are no longer able to support him. I guess I've just got to focus on living to 100 so that he will be pensionable age.

 

My reply from the Chairman is broadly similar, but other than thanking him I am not following it up right now as I'm concentrating on emailing etc friends/family and others re Thursday debate.

It would be a good idea to prioritise matters to be raised with AfME as Clare has kindly agreed to spend an hour a week answering our questions.

 

I agree with @Trish and @Graham, you're both right to be worried.

At one point my employer told me it was likely I would always have symptoms and so might as well carry on working anyway as stopping work wouldn't make the symptoms go away.

I pointed out that while stopping work wouldn't cure me, it would at least help me manage my condition and limit my severity. I reminded them of my doctors report - being lucky enough to have a supportive consultant at the time.

I had just sat through a meeting where I spelled out how badly affected I was, unable to shower regularly, bedbound some of the time, housebound the rest of it and they came out with this.

Even though my doctor had written a lengthy letter explaining about the condition and how it affected me in particular. As far as they were concerned that wasn't what ME was like.

The AfME Toolkit, had it been around would have just convinced them even more that they were right. I urge you, @Action for M.E., to think about how the vast majority of ME sufferers lives are really affected and how this toolkit will cause further harm and suffering to them.

I am sorry @Action for M.E., your toolkit looks exactly like the proposals for the MUS/IAPT clinics from where I'm sitting. Even down to the fact that it seems to ignore the reality of most pwME.

 

Reading all this, I would like to be reassured that @Action for M.E. is not being exploited (possibly unconsciously, possibly not) by BPS proponents, as a low resistance conduit through which to promote BPS thinking on ME/CFS. Just get an uncomfortable feeling about some of this.

 

Thank you Trish for your questions, and for setting them out so clearly; I’ll address each in order here.

First, I just wanted to look at the concept of vocational rehabilitation. A quick Google led me to this 2011 discussion paper which, based on a classification system used by the World Health Organization, defines vocational rehabilitation as “a multi-professional approach that is provided to individuals of working age with health-related impairments, limitations, or restrictions with work functioning and whose primary aim is to optimise work participation.”

Optimising work participation was not the goal of the SEE M.E. project.

Instead, its goal was to help individuals to:

• achieve independently sustainable employment outcomes, which could include staying in work, changing the way they worked, reducing their work, or leaving work altogether
• make measurable progress towards other vocational goals – such as training or volunteering – and/or future employment.

In answer to your questions:

1. a) We were hearing – and continue to hear – from people with M.E. who tell us that they, their employer and the people supporting them need more information about how to more effectively manage staying in work, returning to work or leaving work well. The SEE M.E. project was developed in response to this, in line with our organisational strategy at the time.

Other than being named runner-up in its ‘Vocational Rehabilitation Initiative’ category at its 2016 Awards in 2016, the project has no links to the VRA.

1. b) The SEE M.E. project was delivered by a highly experienced, two-person staff team: a Project Coordinator, and an Employment Adviser. Together they had considerable expertise in developing managing and delivering specialist employment support for people with long-term health conditions and disabilities. Both had an excellent understanding of M.E., born of personal experience, particularly in relation to the employment support needs of people with M.E., enabling them to carry out in-depth case work where required.

Neither was committed to the biopsychosocial model and CBT/GET, or rehabilitation strategies promoted by VRA or its associated companies.

2. I will ask if this is possible and come back to you by the end of next week.

3. Our Patient and Carer Advisory Group, and our Medical Advisers, reviewed drafts of materials published as part of the project – the toolkit, and update to our existing booklets M.E. and work and An employer’s guide to M.E. – and we revised these to take their feedback into account. We did not ask them to review any other part of the project.

4. We do have a Policy Group, made up of staff members, Trustees, and volunteers. Its role is to provide a steer for the charity’s policy, influencing and communications work, not decide what projects we do and don’t take forward. Those sort of operational decisions sit with the staff team, overseen by the Chief Executive.

With regards to evidence-base, I really want to clear up any misconceptions here about the SEE M.E. project being a piece of research based on “recognised scientific trial methods, protocol, ethical approval, prevention of harms etc.”

The SEE M.E. project was not a clinical trial. It was a pilot employment support service, and evaluated as such, based on a theory of change model.

The evaluators:

• measured the impact of the project intervention for clients and partners*
• collected quantitative and qualitative data from clients, employers, trade unions, clinicians and other partners*, before, during and after the pilot
• captured evidence through case studies, service user interviews, staff interviews and partner* interviews.

The way in which project data was gathered and evaluated is one of the things we will make much clearer when we review and revise the toolkit.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

*SEE M.E. was delivered by Action for M.E. in partnership with the specialist M.E. clinic at North Bristol NHS Foundation Trust, and Action on Disability and Work UK, Jobcentre Plus, Remploy and Pluss.

 

Given the provenance of this award and its link with Professor Aylward, perhaps it might have made more sense for Action For ME to reject it on that basis, with a full explanation. Touting this award nomination on its site certainly suggests that the organization was proud of this achievement. Had Professor Sharpe or Professor White offered Action For ME an award for the SEE ME program, would they have accepted that as a positive development? I sure hope not. I don't know that simply saying we have no connection with them--while accepting the nomination--is an adequate explanation.

Added: It raises similar questions for me as the decision to embed this program in an NHS clinic specializing in biopsychosocial strategies.