1. Excercise in the Nightingale definition Post 1
I wrote this a few years ago on another list regarding the Nightingale Definition. I am splitting it into 3 posts in the hope of making it easier to read:
I was reading the new Nightingale Definition of ME (the full version can be found at
http://www.nightingale.ca/documents/Nightingale_ME_Definition.pdf ) and I thought it had a few flaws and that it would be problematic to put to widespread use as a result of lack of access to tests or specialists to interpret these specialised tests. Also I think it might leave a doctor with the impression than a lot of our problems can be tested for at the moment but I still think there is a lot of work to do before we can explain all the symptoms, or their severity, or how they fit together. So I still think the Canadian Consensus definition is more usable to the average doctor.
The problem I have is that while the definition criticises graded exercise programs on the one hand, on the other hand it seems to advocate it. The definition contains comments which could be interpreted (and I think could certainly be used) by some doctors to get the patient to increase activity even when they might not be able to, or to start a graded exercise program, even if a less aggressive GE program than people would have ended up on years ago. These comments could also be used by some to blame the patient for the severity and longevity of their illness.
The comment is towards the end of the definition on the Nightingale Foundation website (
Section I : "Graduated Exercise and the Myalgic Encephalomyelitis Patient".
This is (quote) :
"Once the patient reaches a plateau, or starts to improve, lack of activity will eventually make the patient worse. Depending upon the degree of physiological brain dysfunction, patients should start to increase stressors slowly even if this means a temporary setback. This is neither an easy nor a fast process and again, depending upon the degree of brain dysfunction, may take years until the patient can resume a relatively normal life activity. (3)"
This is then immediately followed by the better comment
"If the M.E. patient conforms to the guidelines set out in this definition, the insurance company can only make the patient worse by instituting progressive aggressive forced physical and intellectual activity. M.E. is a variable but always, serious diffuse brain injury and permanent damage can be done to the M.E. patient by non-judicious pseudo-treatment."
I think there are quite a few flaws in the first few three sentences quoted above.
1. First of all the problems with the first sentence:
"Once the patient reaches a plateau, or starts to improve, lack of activity will eventually make the patient worse."
A plateau is usually used to signify that a patient has reached a point where they are stuck at for a while (could be years) where they do not improve and where they cannot do more. So if a patient is doing as much as they are already able to do but have plateaued what are they supposed to do? And what evidence is there that lack of activity will make them worse?
The plateau could be at any level, as it is not specified, so a patient could be up out of bed most of the day (so not suffering any negative effects from permanent bedrest - I accept that some patients are just to ill to get out of bed most of the time) or they could even be getting a moderate amount of exercise but not able to do more, and what evidence is there for these people getting worse through 'lack of activity'?
Obviously for general health reasons it is good to be as active as possible but is there any real evidence that lack of activity makes ME specifically worse? Personally I do feel better when I do less, or if I cut out certain activities I have energy for other ones.
I think that this sentence saying patients will get worse through lack of activity is a potentially very damaging and dangerous (not to mention unproven).
This comment could also be used to blame the patient for getting sicker or not getting better. So someone might think that if lack of activity makes the patient worse then the patient is at fault for getting worse because they did not do enough activity. We know that in the vast majority of cases patients will be doing as much as they can and it will be the illness itself that for some organic reason that gets worse (because that is how the illness seems to progress in some people or there is an environmental stressor such as the patient gets an infection, does too much, has a drug reaction or something like this) not because of lack of activity on the behalf of the patient.
If lack of activity was making people worse where are all the people complaining about how bad they feel the day after resting or taking it easy? Or saying that they feel so much worse when they do less but that exercising and more activity makes their symptoms better?
Interestingly enough in another part of the definition the fact that people can get worse for some organic reason is implied. Byron Hyde says of what he calls Type 3 on the SPECT Scan (I don't think this categorising system has been verified by an outside person or by a blinded study but he may be right). He writes of these cases:
"
Both sides of the cortex, and either one or all of the following: posterior chamber organs, (the pons and cerebellum), limbic system, the subcortical and brainstem structures are involved. Type 3B are the most severely affected patients and the most likely to be progressive or demonstrate little or no improvement with time."
So this implies that that there can be organic reasons, possibly something to do with the neurological system, that some patients get worse over time.