AFME provide new self advocacy support material

First page for me contains possibly questionable content. The actual part patients can fill in might however be very helpful. As it's available as pdf and word document the first page can be discarded if you wish. I'd be interested in any ideas that could substitute it. I personally would have liked the IOM definition in there somewhere and energy production stuff. I will probably use the rest as a resource.

What is M.E.?

I live with a condition called myalgic encephalomyelitis (M.E.), also diagnosed by the NHS as Chronic Fatigue Syndrome or CFS/M.E. Both of these names are used around the world, but this guide will call it M.E.

The main symptom of M.E. is fatigue, both mental and physical, which feels different from normal tiredness. This fatigue can be made worse by small amounts of physical, mental activity and the symptoms may worsen over a 2-3 day period after the activity. This is known as post-exertional malaise and it is a key feature of M.E. Along with this are a range of other symptoms. I have indicated the symptoms that affect me in the table on the next page.

Different people experience some symptoms more than others. For example, pain can be a big problem for some, and not for others. The condition affects people in different ways: some people are mildly affected, others moderately or severely affected. Some have frequent setbacks or relapses, whilst other people’s symptoms are more stable.

It helps if carers and other professionals understand that just because an individual can manage an activity (eg. a conversation) one day doesn’t necessary mean they can another: please don’t be offended or surprised by this.

What causes M.E.?

Sometimes people develop M.E. following an infection, such as glandular fever. For other people, their illness may have been triggered by a significant amount of stress. A combination of an infection and stress is commonly reported. Occasionally, it seems to come “out of the blue”.

The exact mechanisms underlying M.E. are still unknown. Our current understanding is that the nervous system and possibly the immune and endocrine systems of the body are likely to be involved in M.E. These systems are complex and operate at a deep level inside us. For this reason, someone with M.E. may look well on the outside, even if they are having a really bad day.

With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of “high alert” almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical activity can have a big impact on the symptoms of M.E. Often too much stimulation from things such as noise or light can result in someone with M.E. feeling worse the next day.

Activity and M.E.

People with M.E. often have varying symptoms from one day to another, or even within the same day. This can make it difficult to decide whether or not to attempt an activity. It can be tempting to try and do more on a better day. However, if someone with M.E. does too much in one day, they are likely to feel worse afterwards and have several days recovering. This can lead to big swings in activity over time, known as “boom and bust”. This boom and bust pattern is unsustainable and over time and leads to a reduction in the level of activity a person can manage.
 
Thank you. I'm currently applying for an Education & Health Care assessment for my daughter and some of this will help me very easily explain the illness and her needs. As you say, having the Word document helps to pick out what we need to use.
 
More central sensitisation crap has wormed its way in there!

'With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive.'

Thought by whom? Hypersensitive where and how?

I'd replace it with something along the lines of:

The body is in a hypometabolic state with poor energy transport systems, possible dysautonomia, chronic low-grade inflammation, and CNS dysfunction.

By dumbing things down, they unwittingly support a 'functional' model for ME where everything's loosely understood as vague hypersensitivity to various 'stressors'. It's always one step forward and ninety leaps back with this lot!
 
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I guess it could be worse.

Cinders66 said:
Sometimes people develop M.E. following an infection, such as glandular fever. For other people, their illness may have been triggered by a significant amount of stress. A combination of an infection and stress is commonly reported. Occasionally, it seems to come “out of the blue”.
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Is there any evidence to support this idea that stress is a significant common contributing factor? It's not my experience. I'd change that whole paragraph to
'Frequently ME develops after an infection, such as glandular fever'.
and leave it at that.

Cinders66 said:
The exact mechanisms underlying M.E. are still unknown. Our current understanding is that the nervous system and possibly the immune and endocrine systems of the body are likely to be involved in M.E. These systems are complex and operate at a deep level inside us. For this reason, someone with M.E. may look well on the outside, even if they are having a really bad day.
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A deep level inside us? :rofl: How deep can it be? Existentially deep?
I've heard this thing about the endocrine system being involved but I haven't seen much evidence of it being a primary cause. Highlighting it seems to allow people to head down 'adrenal exhaustion' paths with stress management being the solution. My son saw a very good endocrinologist and she found no endocrine problems.

I'd change it to
'The mechanisms underlying M.E. are still unknown. There is evidence that the body's ability to produce energy is compromised and the immune system is dysfunctional. Someone with ME can look healthy but feel very unwell.

Cinders66 said:
With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of “high alert” almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical activity can have a big impact on the symptoms of M.E. Often too much stimulation from things such as noise or light can result in someone with M.E. feeling worse the next day.
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This paragraph seems speculative and, yes, as @adambeyoncelowe said, seems to be CNS sensitisation propaganda. I'd leave the whole paragraph out unless chemical, light or noise sensitivities are significant problems, in which case I'd just state that.

People with M.E. often have varying symptoms from one day to another, or even within the same day. This can make it difficult to decide whether or not to attempt an activity. It can be tempting to try and do more on a better day. However, if someone with M.E. does too much in one day, they are likely to feel worse afterwards and have several days recovering. This can lead to big swings in activity over time, known as “boom and bust”. This boom and bust pattern is unsustainable and over time and leads to a reduction in the level of activity a person can manage.
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Boom and bust - we don't need that patient blaming terminology. Sometimes doing too much is unavoidable.

'People with M.E. often have varying symptoms from one day to another, or even within the same day. If someone with M.E. does too much in one day, they are likely to feel worse afterwards for several days. Repeatedly doing too much can result in longer term decreases in health.'
 
Sly Saint said:
see also MEA symptoms, testing and assessment:

http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/

and the IOM stuff:
Family Doctor: ME/CFS What Every Family Physician Needs to Know
http://www.meassociation.org.uk/201...ily-physician-needs-to-know-14-february-2018/
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Which is frankly much better. Why does @Action for M.E. keep peddling the BPS line? You don't see the MS Society going on about stress as a major factor in MS! Why is ours the only illness where we have to always slot something in about psychosocial elements?
 
Is it just me but-

I found it quite " dumbed down" - I don't know if this is to help those with brain fog, or if it reflects the standards of those providing the services.
I would agree with the comments raised above.
 
Well I was looking forward to picking this apart and having a good grumble about it, but to be honest I think it's rather good. It's obviously written for someone who is clueless, so it is "dumbed down", but it has to be if it's being presented to an occupational therapist who knows nothing and has to start somewhere and has the attention span to read a brief leaflet at the level of complexity of a Readers' Digest article, or friends and family, rather than to a doctor who would be expected to be able to read something more complex. I can find a couple of things to moan about, just so my time reading it hasn't been completely wasted:

Our current understanding is that the nervous system and possibly the immune and endocrine systems of the body are likely to be involved in M.E. These systems are complex and operate at a deep level inside us. For this reason, someone with M.E. may look well on the outside, even if they are having a really bad day.
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Looks like an idiotic nonsequiter to me. I'm sure lots of illnesses that operate at a deep level make you look like crap on the outside, and there's no reason why they shouldn't.

Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity.
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Well dodgy.

And I didn't like the stress reference either. I thrive on stress, and always feel better when I'm angry and grumpy. And if any BPS quack wants to discuss it with me I'd be happy to argue about it with them until they burst into tears.

But apart from that I think it's fit for the purpose intended, and shall begrudgingly go and look for something else to complain about today instead.
 
Pretty much agree with all the above, but would like to add the following:
People with M.E. often have varying symptoms from one day to another, or even within the same day. This can make it difficult to decide whether or not to attempt an activity. It can be tempting to try and do more on a better day. However, if someone with M.E. does too much in one day, they are likely to feel worse afterwards and have several days recovering. This can lead to big swings in activity over time, known as “boom and bust”.
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as compared with the following twitter quotes from Prof M Sharpe on the https://www.s4me.info/threads/michael-sharpe-skewered-by-johnthejack-on-twitter.3464/page-15#289, in regard to the 'non-use' of actometers.
If the trial was done again it I agree it could be interesting as a secondary measure- and more manageable with better technology available now. But it is not objective - you choose how active to be.
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and
I think I may not have been clear. All I mean is that activity is not necessarily more objective than self report. Whilst people wioth moderately sever CFS/ME may be limited in activity there is still an element of choice - at least in the short term.
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@Action for M.E.
You note that your "This is M.E.' pack is a collaboration between yourselves and North Bristol NHS Trust. Was this document written by someone from North Bristol NHS Trust, (and from which department?), and then signed off by yourselves? If not, could you please identify and/or clarify any direct input, regards yourselves, in the creation and production of this 'pack'?

I can't help but 'feel' that this 'dumb-downed' pack is very similar to the kind of thing used by CFS/ME clinics at an initial assessement (and monitoring) stage? Likewise, I have a suspicion that the format of the document suggests that it could correlate rather nicely with input to a CFS/ME database .. maybe even to feed into NOD?

I would appreciate any clarification you can provide regards my queries.

Wishing everyone improved health and every happiness. John :)
 
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