The Department of Work and Pensions has updated its evidence-based protocol on M.E. for healthcare professionals carrying our Work Capability Assessments.
The new guidance, which the DWP has made freely available, highlights:
Post-exertional malaise and its impact, stating that worsening of symptoms after many forms of physical or mental exertion is a very characteristic feature.
Levels of severity, including that people with severe M.E. “are unable to do any activity for themselves, or can carry out minimal daily tasks only.
That disabling effects of CFS/ME in individuals are variable and both physical and cognitive problems may be seen.
Updating of the protocol was carried out by Dr Alastair Miller in consultation with Prof Julia Newton.
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Ian123
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Feels amazing and reassuring...hoping and trusting this new understanding translates to on-the-ground. Thanks everso much for sharing this valuable info Ian.
True, Ian, thanks for pointing that out (as I now read on page 13)...
Yes, you're absolutely right to do so, in terms of how this may be used and applied to 'us' on the ground.
I note that for those with 'mild' ME, there is an expectation / acceptance of working all the hours, then catching-up during evenings, weekends and holidays, with the need to take some extra days off to manage...and with a sacrifice of social and cultural life in order to do so.
I know this myself from many years of experience and from where I stand now, on reflection this feels quite imprisoning, year-on-year, for all the joy of contributing...I wonder what you think?
On another note, I guess what does hearten me is the emphasis on potential physiological causes, clearly voicing that research hasn't yet got to the bottom of these...and the description of and recognition of p.e.m., which is something I've been struggling to convey to my PIPs decision-maker...as well as the recognition of likely sub-groups /differing phenotype a which may merit different treatment approaches (as research progresses).
I'm also intrigued to find this section (below) about supplements (as for example my GP has only really mentioned taking a multi-vitamin and vit D)...so I feel this is helpful to explore and supports a hunch that this area may be more relevant than we /I suppose.
"Dietary interventions including general supplements, pollen extract, medicinal mushrooms, acclydine (an alkaloid which stimulates the pituitary release of growth hormone), amino acids, essential fatty acid supplements and magnesium supplements have been considered. A group with postviral syndrome did report an overall beneficial effect with essential fatty acid supplements with improvements in symptom measures. Magnesium supplements had an overall positive effect of improvements in measures of energy and pain, emotional reactions, general health and laboratory measures, but not in sleep, physical mobility or social isolation. Supplements such as vitamin B12, vitamin C, co- enzyme Q10, magnesium, NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals are also not usually recommended but may help symptom control."
Ah, on the personality 'front' I see that introversion and a tendency to neuroticism are among several other pre-disposing factors...(and I know for one that I count as introvert...and
'conscientious') so in my case, I'd probably fit this...
A short term view of the mild/moderate that should subsume their existence under working life, when later exercising at 70% of maximum is a suggested limit.
Work until you drop owes nothing too recovery or halting a decline in abilities over a longer term, in a similar fashion that workhouses treated inmates.
Recognising PEM and Cognitive Impairment are reasons for believing that improvements can happen in the understanding and expectations placed on the entire spectrum of severity.
Pre disposing factors are largely unproven when age, ethnicity, social grouping have no evidence, using anything beyond a predominance of females is speculative at least should a scientific approach prevail.
agreed. If you tend to be a workaholic, they will say that is a major contributing factor. I read something recently that said most patients are more intelligent than average and tend to be people who have pushed themselves unduly during earlier years (implications about being ambitions and career driven--well what woman who is intelligent can get through graduate school without doing this? I was quite disgusted that any researcher could not engage their sense of logic to reason this out.)
If you are a calm and relaxed person who does not really want that sort of a life with an average intelligence, they will say you are indolent and basically looking at your symptoms too much and ascribing normal sensations to an 'illness' when others simply ignore them and carry on.
They will say anything, so I would not even take any notice of such stupid statements. They also talk about histories of sexual or domestic abuse. The statistics for women who have experienced these are so high, that it is no wonder any study found a percentage of them who had these. Same goes for all the other assertions, as Ian says.
Clear information on brain fog when my DLA tribunal dismissed out of hand any reason my memory had in ability for personal care. Smoke alarm was a reminder of something left in a pan a burnt pan was no evidence of cooking been unsafe only two years ago.
So sorry... Hugs. I had some similar difficulties a few years back. It makes you feel that you are worth nothing to them at all and your safety or quality of life is clearly of no consequence except that they can't come out and say that in plain words like I just did.
Safety and quality of life the plain words we both should have heard given the justice of cause carried. You are worth it believe in yourself, gain strength from difficulties overcome.
very good news. Now all I have to do is find a doctor who will assess me for ME instead of my Fibromyalgia diagnosis only. Nothing so far in a search of any area I can get to from where I live. And how I wish I were up north near these two excellent researcher/clinicians.
That seems a very sensible approach. With all the nonsense and my tendency to speak the truth in the face of stupid comments, It's probably better I don't see a doctor who holds uneducated opinions over any desire to learn about patient's illness and experience of their own bodies. It can only result in stuff i don't want appearing on my chart, and more 'refuses to go along with protocol' kinds of statements. I already regret a letter I sent to previous GP begging her for some proper attention to my illness and useful treatment. I do not know what may appear on my records. Can't afford to pay for copies of them.
This may sound odd, but I wonder if I am better off not knowing what inaccuracies and suppositions doctors have written in my records which are a matter of opinion that is not founded on any facts.
I have grown so distrustful of doctors that I worry it will show in my tone of voice and that I may make wrong assumptions about them. This whole M.E. or Fibromyalgia or both or whatever it is I have, and the way it is dismissed, ignored, or spoken of by doctors with their tongue in cheek and hoping we don't know how they may think and speak of us once we are out of sight, has me feeling so uneasy.
I am as uneasy about my ability to come to any clear judgements about myself and my condition as I am about their input. How would you know if you were indeed making yourself believe you are sick?
I am serious here. I have a lifelong trend of introspection and self-questioning when I deal with people. I have sometimes been disbelieved when I make a statement--even told that actually the opposite is what I think or feel (!) accused of being manipulative when I am speaking in a straight and honest way.
I wonder if some of the rest of you struggle with these same difficulties. Please reply. It helps to hear about your views and experiences.
I get part of leaving history behind my only problem is the historic distrust shaping the future.
The older I become in experiences the more cynical my nature - hope for the best and plan for the worst.
An experience that does not kill you makes you stronger for the next challenge that will test self belief and resolve improvement in quality of life is possible.
Personally improving my own position and carrying on spites those that would neglect me with their ignorance.
Coal Mine (working title) follows the lives of several remarkable people living with a Myalgic...
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Nothing so far in a search of any area I can get to from where I live. And how I wish I were up north near these two excellent researcher/clinicians.