Action for M.E. hosts DWP spotlight training

Andy said:
Seems to me, unfortunately, that AfME could really do with a name change to Action for Mild ME.
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It isn’t even that though as i had mild ME and tried to keep working following the advice in AFME pacing booklet and guide for employers. It did not work I was not able to increase working hours beyond 3x5 hour days a week and even that was in the end unsustainable.

There is a dilemma in being totally frank with employers as if they realise how bad ME can be they may move to dismiss people more quickly after diagnosis. If someone is working for an organisation with proper HR policies they have more protection but there are a lot of robotic managers out there even in organisations you would expect better from.

In many cases it may not be the right option for someones health to try to keep working. I understand why people try to hold on to jobs rather than being thrown in to the chaos that is the state benefits system or trying to get benefits from employers schemes. In my case if i had had a proper NHS medical specialist to be referred to and got the advice that I eventually got privately I would almost certainly have gone for Ill health retirement 2 years sooner - not only would that have been better for my health but I actually get paid more from my pension than I was earning from only being able to work 40% of full time. So I had actually been losing out financially and health wise for 2 years.
 
Amw66 said:
Is GET not an ongoing 10% incremental increase ( ie not just 10% max)?
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You are right GET does suggest going on increasing. However I stand by my point that the idea of finding a baseline as a starting point from which you increase activity is fundamentally wrong and is the basis of GET. They also describe pacing as ''a structured way of balancing activity and rest known as pacing.'' I don't think pacing is about structure, it's about listening to the body. Structure implies rigidity and ignoring symptoms.

That's my problem with the whole document with its rehabilitation approach - it implies finding a baseline is a start from which you build up activity.
 
My main concern is that this is being promoted to people working with patients before we have any evidence that it's actually useful for patients. It's ridiculous. Having a major patient group behaving so badly also works against our attempts to argue that treatments like CBT/GET/LP/drugs/etc shouldn't be promoted to patients with positive spin and without good quality evidence of their efficacy. Action for ME keep turning themselves into a prime example of what we need to be fighting against when it would be so easy for them to not do so.
 
This might explain the DWPs interest:
https://www.s4me.info/threads/uk-de...erm-unemployed-disabled-people-launched.7556/

The information supplied by AfME is only going to make it harder for pwME going thro the benefits system.

As with PACE, their support for this kind of 'return to work no matter what' ethos is only going to reinforce the idea of ME sufferers as 'psychologically challenged malingerers'.

PACE helped the DWP define the 'return to work strategy'. This is almost a continuation of that.
 
Sly Saint said:
haven't finished reading it but I can't see anywhere that it points out that this whole thing really only applies to people who are 'mild'.
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Good, because it doesn't apply to people who are mild.
Andy said:
Seems to me, unfortunately, that AfME could really do with a name change to Action for Mild ME.
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Nope, their advice is just as fucking useless for mild sufferers.

Excuse me, in my annoyance I used a word which I now regret. "useless". I should have said "catastrophically and life changingly dangerous". If they had been asked to publish a leaflet on how to turn a mild case of ME into a moderate or severe case, they could just re-use this leaflet, no need to change a thing, it'll do the job nicely.
 
TiredSam said:
Good, because it doesn't apply to people who are mild.

Nope, their advice is just as fucking useless for mild sufferers.

Excuse me, in my annoyance I used a word which I now regret. "useless". I should have said "catastrophically and life changingly dangerous". If they had been asked to publish a leaflet on how to turn a mild case of ME into a moderate or severe case, they could just re-use this leaflet, no need to change a thing, it'll do the job nicely.
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Apologies TiredSam and others. I put 'mild' in quotes for a reason.
The definition used by AfME seems to be the one from the NICE guidelines which is useless. And it is people who supposedly fit this definition that the leaflet is aimed at.

"People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week."

see: https://www.actionforme.org.uk/what-is-me/introduction/

AfME then go on to say on that website page:

"Even in its so-called mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers."

In their leaflet, they seem to imply that all pwME (apart from 'some people' who are severe) fit this definition (of 'mild') and they just need a bit more 'help and understanding'.

This is what I was trying to get at.

eta: the DWP would take this to mean that any pwME could achieve this level of activity (ie get back to work) if only they tried a bit harder.
 
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No apologies necessary. But this:

"People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week."
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Describes me perfectly. It leaves out PEM and all the rest of it, but what is in that description applies to me. Their advice in the leaflet about pushing boundaries is totally inappropriate, it would lead to a deterioration to moderate or severe. I've tried it, done the research, lived it for 5 years. I don't need help and understanding from a clueless therapist with a leaflet, it would just be another burden to deal with.

The advice in their leaflet might help someone with fatigue or depression, but the fact that they don't seem to be able or willing to distinguish between advice for such people and advice for those with mild ME is very concerning. Especially for those with mild ME. Perhaps if they hadn't been willingly duped by so many studies which included fatigued or depressed people they wouldn't be so clueless, but unfortunately they seem willing to take advice from everybody except sufferers, who are not allowed to speak unless nicely on their web platform. Despite being granted membership, they have not really engaged in any meaningful dialogue here, or even shown up very regularly, unless to make another of their heart-sink announcements.
 
By the way, I have improved over the last 5 years, so AfME should be listening to me. I've done it by not following their advice. I've done it by doing my best to create the conditions where improvement can occur if it's going to, which means cutting back all activity you can to baseline if you're lucky enough to have one, then staying there. If improvement occurs then you can follow it along as it does, but never push for it or expect it. It takes months / years, only after 4 years in 2018 did I start feeling like my old self again instead of a zombie. If I had followed AfME's plan and pushed for improvement I'm absolutely postive it would set me back years or make me worse than I've ever been. Never push. If AfME have a problem accepting that there can be an illness where the usual homespun advice doesn't apply, or that recovery or rehabilitation isn't an appropriate goal, then they know nothing about ME, which is quite an achievement given how long they've been in the game. If they are so determined to build an empire giving inappropriate advice to vulnerable populations why don't they just go the whole hog and start visiting hospices and see how far they get saying "we're here to support you in your recovery and rehabilitation".

I'm ranting. Type A and all that, sorry. But I'm getting better by being a grumpy bastard doing the opposite of what these idiots say.
 
I agree with everything @TiredSam says.

If you are lucky enough to be in the small minority of people with ME able to find your baseline, then stick inside it. Energy envelope and all that. A small step outside it can set you back hugely as I have found to my cost repeatedly. I try to think back to when my ME was mild and I was still working and running a home. This booklet would have caused me harm and shortened the time I was able to keep working.

The first part of the advice seems OK about finding the baseline, and the stuff about explaining to employers about support needed and pacing if only they would get the description of pacing correct. Real pacing is not the structured, planned, goal driven variety AfME describes.

BUT they spoil it all by talking about goals, phased increases etc which is positively harmful. And they completely ignore PEM and the need to listen to the body and stop before you have done too much.

And to provide this leaflet to the DWP whose role is to assess people for state benefits is totally wrong and irresponsible. NOBODY with ME should be put in a category that is focused on rehabilitation and goal setting and preparing to get back to work or increase work. It is HARMFUL. Giving DWP assessors the advice that this is the right approach for pwME is likely to deprive thousands of sick people of the state benefits which they need and to which they are entitled to help them live.

@Action for M.E. please withdraw this booklet and notify the DWP it is not fit for purpose and the information in it is wrong.
 
It is completely irresponsible information to give to ME patients and anyone who comes in contact with them.

In my own experience, despite being diagnosed as having severe ME, by an experienced consultant, the powers that be constantly just ignore the word severe. It's been like being caught in a loop - constantly pointing out that what has been suggested is noted as appropriate for "mild" ME only. Though, in truth, I would question whether much of it is suitable for anyone with ME.

There is nothing in the toolkit that emphasises that, through inappropriate advice, healthcare professionals and employment advisors could easily cause long term, if not permanent harm to patients.

In my own experience, giving up work (on what I expected to be a temporary basis, because "most people recover in time" :rolleyes:) was one of the hardest and most frightening things I have ever done. I needed to be persuaded and supported to stop & not just slow down, to just go and rest and stop worrying about work and to start worrying about my health first and foremost. The exact opposite of the advice in the handbook.

There is also an assumption that the level of severity either remains the same, or improves with time and management. This is simply conjecture - I haven't seen any sound research that backs that up.

From my own experience of ME or CFS (not just a symptom of chronic fatigue), AfME are playing Russian Roulette with patients health and safety - with the nasty twist that the odds are stacked the other way - the majority of patients will be harmed by this. The odd lucky (possibly misdiagnosed one) might be okay.
 
I haven’t the energy to read all posts on this thread, but from what I gather this sounds like @Action for M.E. are promoting a kind of GET via the workplace? Via goal setting and increasing activity.

I was given this advice (when no longer able to work) in my earlier years, it was called pacing but it wasn’t as it should be. I was told to increase by 10% and then another 10%, progressively. No mention of when to stop increasing and virtually no support.

I did this slowly, even had a stopwatch.

Eventually this style of pacing led to a severe relapse. I am now much worse than I was prior to that ‘therapy’.

I can see this kind of information causing confusion at best and being disastrous at worst - assessors may presume that gradual increments would be beneficial for a person with ME. In my experience this is not the case. My health has deteriorated after trying (more than once) this kind of incremental approach.

I find this very concerning.
 
Trish said:
I was positive throughout, never gave in or gave up until forced to. How dare they suggest that a bit of encouragement to be positive, to set goals, and help with 'rehabilitation' was what I needed.
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Similar here.

I find it very concerning that an ME charity, supposedly advocates for a vulnerable patient group, are providing information and guidance such as this.

@Action for M.E. I’m confused by your guidance for people who aren’t aware of the limitations and fluctuations, severity and unpredictable nature of ME.
 
Was it not always believed that since the takeover, whenever that was, the role of Afme was to represent the wishes of government to patients, rather than vice versa. They might occasionally try and do something to dispel that impression.


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Trish said:
@Action for M.E. please withdraw this booklet and notify the DWP it is not fit for purpose and the information in it is wrong.
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To emphasise how damaging this is, just try tying it in with this:
"Disabled people will be able to work with a dedicated key worker to get and stay in employment, the new Work and Pensions Secretary Amber Rudd has announced today."
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https://www.s4me.info/threads/uk-de...erm-unemployed-disabled-people-launched.7556/

This is a nightmare scenario for pwME who are on state benefits.
 
Trish said:
This is a nightmare scenario for pwME who are on state benefits.
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And our charities should be making clear there is a huge difference between
a) being ill with an on going condition that can be made worse by exertion where there is no effective treatment.

b) being long term disabled with a fixed disability, who will not be made worse by exertion as long as there effective support and safeguards in place to protect them.

The issue for the vast majority patients is NOT that we don't want to work, or lack confidence in our abilities. It is that we are too ill to work and pushing through will destroy the function we have left.

@Action for M.E. are not only wilfully misleading and putting all ME patients in harm's way here, they are also seriously misleading government departments. When mild patients becoming severe and are no longer able to look after themselves, who is going to foot the bill for that?

Edit -spelling
 
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@Action for M.E. hi i know you are just the rep who comes here, so this isnt directed at you personally, but i want to tell AfME how absolutely disgusted i am with them for this. I dont know whether to cry or explode.

I, like many others am a sufferer at the moderate end of severe. ie predominantly housebound & often bedbound.
Do you not KNOW how petrifying it is, how incredibly stressful & deleterious to one's health it already is, to go through these benefit assessments? Do you not know that i descend the stairs in the mornings (when i can) feeling sick with anxiety until i see there is no mail from the DWP? Do you not KNOW that for many if not most of us 'rehabilitation' is a far off fantasy, that we have done all the CBT/GET bullsh*t & only got worse, that convincing the DWP that for many of us a return to work is simply impossible & will remain so until some better treatment is found or spontaneous remission/improvement occurs. No matter how goal oriented & confident I am, that remains the case.

You AfME, have just messed up my chances if i get one of the assessors you have so kindly 'educated'. How DARE you teach them that my problems would be alleviated by support to build confidence & help to set goals etc. I am beyond furious, because now it's going to be even harder, now it's going to be even more scary at my next assessment, wondering if my assessor is one of the ones who has been taught by you that if they are supportive & encouraging & solution focused with me & help me set goals & believe in myself i will magically get well enough to work. I could teach them, and you, a great deal about being positive, about self belief in the face of insurmountable obstacles & about setting goals!

So thank you, thank you very much indeed. You, who are supposed to be helping people like me have made my life harder, & possibly (if i do have the misfortune to get one of your chosen assessors) catastrophically so. It may end up been directly, your, fault that i cannot afford heating or food & end up at a foodbank. Yours, do you understand me?

You screwed us royally by cosying up to Crawley et al & supporting PACE, ensuring that proper medical care & treatment moved further away, & abuse was supported. And now you scupper the chances of financial & therefore actual survival of anyone but those with the mildest form of CF.

Never have i been more disappointed & disgusted. If this is what you have to offer, you need to pack up shop & go home. We don't need your kind of "help" thank you, we were better off without it.

Edited to add - in the very unlikely event that anyone from AfME or interested party does actually read this, please know that my fury comes from a place of deep wounding, a wounding you have rubbed salt into. I am profoundly hurt by your actions in this matter. - See my later post #56
 
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