I have just finished reading the whole booklet. It's unclear who it is intended for, as it is a mishmash of basic information about ME/CFS, including copying chunks of the NICE guideline, a summary of different theories about ME/CFS, and a long list of bits and pieces of research, with some caveats about some of it not being established facts and needing replicating. Then there is a section on the need for more research including a lengthy advertisement for the MEA itself and invitation to donate to research funds.
Specific concerns:
No mention of PEM in the initial summary of key points.
Emphasis that ME/CFS is hard to diagnose and can be confused with other conditions, but no mention that PEM, if properly understood, is key to diagnosis and distinguishing it from other conditions that cause fatigue.
Too much emphasis on the effect on emotions compared with the physical and cognitive loss of function. Makes it clear our function is reduced, but not what stops us functioning.
I didn't spot any mention of OI apart from a brief note about POTs.
Too much uncritical support of the expertise of therapists, including this really bad statement in the key points:
"There are options that can help people manage their ME/CFS, but atherapy that helps one person may cause harm to another, so a carefullytailored plan and specialist advice is always needed."
I felt reading the whole thing that there was something missing. It gave me no feel for what ME/CFS is actually like. A list of symptoms and severity levels, and comments that it can be hard to cope with emotionally, and some people don't believe us, and some people can't work and some are housebound without a clear picture of why we are so disabled, what stops us doing stuff, and how we need to manage every part of our lives.
This part quoted below is problematic because it just says the MEA believes the first model, without explaining clearly why the other models have been shown to be wrong with treatments based on them causing harm.
Traditionally there were three main views held by the medical profession:
1. That ME/CFS is most often triggered by an infection leading toa chronic disease state in susceptible individuals resulting in key symptoms that cause functional impairments and a reduced quality of life.
This is the view that has been held by the ME Association since we were established in 1980 and is one that is gaining much wider acceptance.
An increasing number of research studies have shown that the disease process involves for example, the brain and nervous systems, the immune system, the endocrine (hormone producing) system, muscle, and mitochondria (energy-producing cells).
However, while these studies have produced interesting results, they are often small and in need of replication. But the recent interest in Long Covid is having a positive effect as studies are revealing similar results on a larger scale.
In regard to emotional and behavioural issues, we believe they area perfectly understandable result of living with – and not a cause of –ME/CFS and should be treated, where appropriate, by mental health professionals who form part of multidisciplinary ME/CFS specialist services.
2. That ME/CFS involves a combination of physical, psychological andsocial factors: the biopsychosocial (BPS) model.n This model assumed that, while ME/CFS is often triggered by a physical stressor such as an infection, persisting ill health is largely maintained by maladjusted behaviour, unhelpful illness beliefs andinactivity causing physical deconditioning.
3. That ME/CFS is a psychiatric disorder with no physical disease process. A few doctors still take the view that ME/CFS does not exist or is just a form of atypical depression or hysteria, despite evidence to the contrary
All it says in conclusion to those 3 models is:
With the NICE Guideline on ME/CFS and other more recent developments, the NHS and social care providers should have an improved awareness and an increased understanding of ME/CFS. We hope that people with this very real disease will now feel believed, have their experiences validated and receive a much better standard of care and support from healthcare providers.
I think the section on perpetuating factors has the same problem of not saying why the BPS view of perpetuating factors is wrong. It seems to focus on what different groups believe, rather than what evidence shows.
Perpetuating factors: This is where the situation becomes far more uncertain, and where disagreements emerge in relation to what then perpetuates or keeps the illness going. New research on brain structure and function suggests that infections, or events prior tothe onset of ME/CFS, may help to prime or activate immune system cells in the brain called microglia.
Those who – like the ME Association – adhere to the physical model of causation believe that ME/CFS is perpetuated by a complex interaction involving changes to the way in which the brain, nervous system, muscle, immune and endocrine systems respond to the triggering viral infection, or other immune system stressor. When the infection or other event has passed, the body fails to return to its normal state, symptoms persist and new symptoms develop, and functional incapacity continues or worsens.l
Those who believe that ME/CFS is a mental health or somatoform disorder argue that symptoms are largely prolonged by what are called abnormal illness beliefs and behaviours, along with physical deconditioning. And that any physical abnormalities are
caused by factors such as sleep disturbance and inactivity.
