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Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2019, Friedberg, Sunnquist and Nacul
I would have liked them to reference the FINE trial, sister to PACE, otherwise they’re just ignoring the severe it seems to me. FINE AFAIK had null results so supports the argument they make. Basically they are advocating pacing and The limited symptomatic relief that’s available, for pain sleep etc. It might be a useful brief document to give health professionals. important point
I would like literature to stress that poor or inappropriate management can cause serious harm.
I would like literature to stress that poor or inappropriate management can cause serious harm.
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FINE is also what the RCGP module seems to be based upon - it would be good if it had wider coverage
Workwell still use some exercise with some patients don’t they? but a different approach not GET aerobic exercise
Andy
Senior Member (Voting rights)
To be honest, I don't have an issue with that. But it is obviously reliant on there being a large enough gap between the level of energy required for an individual to live relatively comfortably and their sustainable exertion limit, and it is that subtlety that is very hard to get across. Certainly it would have been best if they had explained this particular point further, assuming they think in the same way that I do.
That's what I thought they might be referring to, but the references were not to Workwell. I don't think the Workwell people claim their very brief exercises do anything other than help maintain some function. I have not seen them claim their exercises lead to an increase in available energy, but I haven't read their stuff recently.
The trouble with this claim is that it plays right into the hands of the worst of the current 'therapists' who claim to be able to know what they are doing advising individual patients to increase activity.
Barry
Senior Member (Voting Rights)
I think their quote is unfortunately worded, but in principle is OK if they had got across properly what the really meant to say. My guess is they meant something more like this:
"Pacing is about ascertaining how much - or how little - exercise an individual can do whilst avoiding (or at least minimizing) post-exertional malaise. Because it is crucial to not overdo things initially, when pacing is first attempted it should begin with a very low rate of exercise. As each individual's pacing develops and becomes better understood, it may be that for some they can then very carefully increase this, but still without triggering PEM, or at least minimizing it. Note however this is not a programme of steadily increasing exercise! It is about pacing, being guided by a patient's ability and limitations to exercise, and by their responses to exercise. It is most definitely not a time-based incremental exercise regime, completely disconnected from the patient's physiological needs."
The trouble is, @Barry, they didn't say that. Their statement implied not just that you can exercise within your energy envelope, but that by exercising you can increase your energy envelope.
Watching the workwell people talking on the first 'Dialogues for a Neglected Illness' video it was clear that someone who thought she was doing just that by doing regular short walks that seemed to be within her energy envelope had actually shrunk her energy envelope without realising it.
http://voicesfromtheshadowsfilm.co.uk/dialogues-project/
Mark Van Ness says this at the end if the video:
The point I have tried to make is that the increase in energy envelope comes first, with careful pacing and if you are lucky, and enables the extra activity, not the other way around. You can't stretch the energy envelope by exercising.
Watching the workwell people talking on the first 'Dialogues for a Neglected Illness' video it was clear that someone who thought she was doing just that by doing regular short walks that seemed to be within her energy envelope had actually shrunk her energy envelope without realising it.
http://voicesfromtheshadowsfilm.co.uk/dialogues-project/
Mark Van Ness says this at the end if the video:
The point I have tried to make is that the increase in energy envelope comes first, with careful pacing and if you are lucky, and enables the extra activity, not the other way around. You can't stretch the energy envelope by exercising.
Peter T
Senior Member (Voting Rights)
In order to respond to such as this, do we need to develop our own wording, a statement to make it clear what we are saying about the limitations ME places on exertion and what the dangers of exceeding those limitations are? It is important to be clear that we are not advocating a blanket ban on any physical exertion, but rather advocating that an individual remains within their current individual limits as to the amount of exertion they can tolerate within a single activity and within the total energy they have available over a period of time.
I suspect for some people exercise has become a good thing in itself, part of their sense of well being. Also the dangerously fuzzy wording of such as discussed by @Barry and @Trish is likely to come from fuzzy well meaning intentions not to through the baby out with the bathwater. But we desperately need a clearer understanding of which is the baby and which the bathwater.
The main points:
- by definition over exertion exacerbates the symptoms of ME, there is some research evidence relating to the physiological basis for this.
- despite a number of research projects, there is no objective evidence that structured increases in exercise, GET, improves the underlying medical condition. In fact overall the objective evidence contradicts this.
- there is considerable survey evidence and anecdotal evidence that for a percentage of people such arbitrary increasing in activity as involved in such as GET causes real harm and potentially significant long term deterioration in their underlying condition
- at present the only reasonable advice is for individuals to remain within their current limitations either for an individual activity or for their total activity over a period of time, that is remain within their personal current energy envelopes.
- this is confused by the fact that different individuals may experience fluctuations in their underlying condition and consequent variation in the amount of exertion they can safely undertake. Some experience cycles of relapse and remission even if the remain within their energy envelope, other’s condition remains stable, and others experience ongoing deterioration or improvement, so any activity management must take this underlying variation into account
- exercise is not inherently bad for people with ME as long as it is within their current limitations, and for those lucky enough to be spontaneously improving that may be able over time to increase their activity levels as long as remaining within their current limitations
It is important that professionals do not allow their wish to help people improve to confuse activity management with therapeutic intervention aimed at improving the underlying condition. This is particularly important with patients currently experiencing some degree of spontaneous remission. It can also be confused by the likelihood that patients undertaking a focused activity programme will reduce other activities in the life to undertake that programme. This can introduce the illusion that they are generally improving when they are, though improving within the programme, not changing their total activity levels.
Has this already been done elsewhere, or if not is it a useful exercise that would warrant a separate thread?
(sorry if this is confusing, I am probably trying to respond to different threads with a single comment that ends up being out of context in both threads)
I suspect for some people exercise has become a good thing in itself, part of their sense of well being. Also the dangerously fuzzy wording of such as discussed by @Barry and @Trish is likely to come from fuzzy well meaning intentions not to through the baby out with the bathwater. But we desperately need a clearer understanding of which is the baby and which the bathwater.
The main points:
- by definition over exertion exacerbates the symptoms of ME, there is some research evidence relating to the physiological basis for this.
- despite a number of research projects, there is no objective evidence that structured increases in exercise, GET, improves the underlying medical condition. In fact overall the objective evidence contradicts this.
- there is considerable survey evidence and anecdotal evidence that for a percentage of people such arbitrary increasing in activity as involved in such as GET causes real harm and potentially significant long term deterioration in their underlying condition
- at present the only reasonable advice is for individuals to remain within their current limitations either for an individual activity or for their total activity over a period of time, that is remain within their personal current energy envelopes.
- this is confused by the fact that different individuals may experience fluctuations in their underlying condition and consequent variation in the amount of exertion they can safely undertake. Some experience cycles of relapse and remission even if the remain within their energy envelope, other’s condition remains stable, and others experience ongoing deterioration or improvement, so any activity management must take this underlying variation into account
- exercise is not inherently bad for people with ME as long as it is within their current limitations, and for those lucky enough to be spontaneously improving that may be able over time to increase their activity levels as long as remaining within their current limitations
It is important that professionals do not allow their wish to help people improve to confuse activity management with therapeutic intervention aimed at improving the underlying condition. This is particularly important with patients currently experiencing some degree of spontaneous remission. It can also be confused by the likelihood that patients undertaking a focused activity programme will reduce other activities in the life to undertake that programme. This can introduce the illusion that they are generally improving when they are, though improving within the programme, not changing their total activity levels.
Has this already been done elsewhere, or if not is it a useful exercise that would warrant a separate thread?
(sorry if this is confusing, I am probably trying to respond to different threads with a single comment that ends up being out of context in both threads)
@Peter Trewhitt , I like most of what you have suggested just above, but I'm a bit concerned at the tendency to write "medical condition" or "underlying condition" instead of disease. I'm not sure you say disease even once. Perhaps this is deliberate, but if so, I'd advise you rethink that.
Barry
Senior Member (Voting Rights)
Yes, you are absolutely right.
Andy
Senior Member (Voting rights)
No, it's not been done, and is the sort of thing that I hoped to interest members in doing on this thread, https://www.s4me.info/threads/a-pot...-advocates-need-to-know-and-understand.11610/. Sadly, I tend to have more ideas (good or bad) than I can actually action myself.
Arguably you are also trying to do a very similar thing that I attempted with my descriptive model of ME, https://www.s4me.info/threads/andys...le-descriptive-model-of-me.10942/#post-195743
I'd encourage you to develop your idea, I think it's something important that is currently lacking in the ME advocacy world. It looks likely that my available time will be very limited in the near future, so I'm afraid I can't commit to develop this or any other idea.
Side note: an analogy that I have just thought of is that our energy limits could be viewed as similar to a speed limiter on a vehicle engine. Just a thought, people can run with that idea or not as they choose.
Barry
Senior Member (Voting Rights)
Trouble is I'm not sure if we yet know enough about ME to very specifically call it a disease. And I really do mean I don't know ... I've no medical qualifications.
Could you comment on this please @Jonathan Edwards?
Barry
Senior Member (Voting Rights)
I don't mind chipping in if it helps, though not much time for next week or so. I think the final form of words would only need to be quite short, and better for that. It's really about correcting deeply ingrained misconceptions, and bringing about new insights.
@Barry, "medical condition" or even "underlying condition" would include deconditioning and strained muscles and hang nails. Also, it seems like we are avoiding calling a spade a spade due to political sensitivity - and to a certain extent, medical ambiguity at least in terms of causation. I think we take control of our own disease and label it as such. Just because we don't appreciate yet the causative mechanism doesn't make it any less a disease. Are MS or Alzheimer's not considered diseases?
Edit to add: Moreover, "condition" is like leaving the word blank - most doctors will fill it with their own bias, and many of those will choose depression etc.
Edit to add: Moreover, "condition" is like leaving the word blank - most doctors will fill it with their own bias, and many of those will choose depression etc.
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rvallee
Senior Member (Voting Rights)
I think that's mostly because typically something isn't considered a legitimate disease until its mechanism is known? For common parlance disease should definitely be used, there's just a higher threshold in scientific literature.
Granted, that's not helpful given the reality of some people being aggressively motivated to prevent some diseases from being recognized, a reality that is awkwardly left unvoiced as it's so absurd that it raises all sorts of issues about the basic functions of medicine, and explains much of its failures. It's a bit like money in politics, everyone knows it breaks everything but no one dare say it too loudly because moving away from this is too big to fathom.
rvallee
Senior Member (Voting Rights)
A pretty good paper. Despite, as some of the comments pointed out, some language that can and will be abused by saboteurs as they are worded in an ambiguous way, but then that happens regardless so whatever.
It raises the important point of how CBT is otherwise never considered curative. That was a particularly insulting deflection by Sharpe, noting that it's commonly used in cancer and other serious diseases, ignoring that it is always so as an adjunct to the actual medical treatment and never even expected to lead to any improvement in ability to function, only in coping with the worst of it. This point should be raised more often, it is such a dishonest and unethical argument used by deniers, knowing full well its use in the psychosomatic model of ME is completely different than usual, and done without evidence of efficacy.
It's fairly short, too. Most of its length is references.
Some noted how it would have been helpful to reference the FINE trial as well, given its influence in GP training in the NHS. I think that part is largely unknown, unlike PACE. So this actually highlights that more attention should be given to FINE as its influence flies under the radar, despite in some ways having just as much impact as PACE.
It raises the important point of how CBT is otherwise never considered curative. That was a particularly insulting deflection by Sharpe, noting that it's commonly used in cancer and other serious diseases, ignoring that it is always so as an adjunct to the actual medical treatment and never even expected to lead to any improvement in ability to function, only in coping with the worst of it. This point should be raised more often, it is such a dishonest and unethical argument used by deniers, knowing full well its use in the psychosomatic model of ME is completely different than usual, and done without evidence of efficacy.
It's fairly short, too. Most of its length is references.
Some noted how it would have been helpful to reference the FINE trial as well, given its influence in GP training in the NHS. I think that part is largely unknown, unlike PACE. So this actually highlights that more attention should be given to FINE as its influence flies under the radar, despite in some ways having just as much impact as PACE.
Jonathan Edwards
Senior Member (Voting Rights)
I agree 'a disease' is not very appropriate for ME as yet and may never be. There are various implied meanings for 'a disease' but I don't think ME really qualifies for any of them. That is my reservation about SEID. In general 'a disease' is used to imply either a single common etiological agent (like TB or haemophilia) or established pathology (like Alzheimer's).
I would suggest we have not definitively established the pathology for Alzheimer's or MS. In addition, this leaves some gaping holes. For instance, is a gambling addiction then not a disease? Are channelopathies without genetic markers not considered diseases? I can go on.
If we leave an ambiguous qualifier in front of ME/CFS, history demonstrates time and again that will be filled to our detriment.