I think you make a lot of good points.
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Time for the Big Talk. How's the CAA doing?
- Thread starter hvs
- Start date
Good point (IMHO)
Tom - maybe have 4 generations around makes you even more than normally clear and able to express key points. I don't think that this point has been emphasized enough (from this last post:
This is so true for me. Life, energy usage, is a very fine juggling act.
I know that I, and what I infer from most people's posts most people here, try to use every iota of energy that I have everyday while staying within my "energy envelop" (that invisible fluxing border) to prevent PEM and/or a relapse.
It's an extremely fine balance. And if anything is added, something else has to go. And usually, what there is in my envelop isn't enough to maintain a poor version of pre-disease basics. So if a walk, of even a few steps somedays, should actually be possible, and I add it, a shower and something else from the survival list - paying bills, social contact .... will have to go.
This is so true for me. Life, energy usage, is a very fine juggling act.
I know that I, and what I infer from most people's posts most people here, try to use every iota of energy that I have everyday while staying within my "energy envelop" (that invisible fluxing border) to prevent PEM and/or a relapse.
It's an extremely fine balance. And if anything is added, something else has to go. And usually, what there is in my envelop isn't enough to maintain a poor version of pre-disease basics. So if a walk, of even a few steps somedays, should actually be possible, and I add it, a shower and something else from the survival list - paying bills, social contact .... will have to go.
The litigation point can be useful.
The thing is that GET can often be used for other neurological conditions - they don't have to fear the adverse reactions we have in general.
I remember Orla telling me about a tv program she saw where some guy had some neurological problem. He went to China where he was doing 5 hours a day of physical activity with the help of physiotherapists/physical therapists!
G
Gerwyn
Guest
depends on the neurological condition but i take your point. GET is a pretty loose definition and has serious connetations re causation.i think the term should be abandoned by any advocacy group worth its salt.Why engage in a branding excercise for the oppostion especially when there is no scientific evidence in support of it
usedtobeperkytina
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It is information for patients and public at large. It is a brochure.
tina
tina
Hope123
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You know, if people really want the CAA literature/ website to change, rather than just posting our opinions here, consider VOLUNTEERING to help the CAA review its website and materials. Perhaps small virtual work groups could be formed, test versions of documents sent out to relevant parties (researchers, patients, advocates, etc.), etc. This, of course, also depends on the CAA's interest/ openness in doing this too. Our limited energy can be put to effective use.
Dr. Yes
Shame on You
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Hope, I would be on board with that, to whatever capacity I can contribute.
Whether the CAA is that open to that degree of our involvement is another question.. and the issue of CAA leadership raised previously would remain. But I think a lot of us would welcome this opportunity (the suggestion had already been made on the CAA pamphlet thread and elsewhere, if I recall correctly).
Whether the CAA is that open to that degree of our involvement is another question.. and the issue of CAA leadership raised previously would remain. But I think a lot of us would welcome this opportunity (the suggestion had already been made on the CAA pamphlet thread and elsewhere, if I recall correctly).
Yes I thought it was interesting as the man was very disabled, and would have appeared to most people as if he was more disabled than most ME/CFS patients, but he was able to tolerate 5 hours (sometimes 5 and a half hours) of physical therapy a day. It would have been pure torture to an ME/CFS patient. But seeing it helped me understand why a lot of doctors and physio's really don't get it with us.
Physio can help a lot of people who are recovering from strokes, neurological-injury and some people with neurological illnesses. No wonder they don't get it with us. We seem better, and stronger physically, than some of these people, yet would never be able to tolerate these programmes.
The difference betwen us and others is that we are not getting treatment for our underlying condition, we have a very abnormal response to exercise, we have delayed recovery from exercise, and we generally don't feel the full effect of what we do until a day or so later, so it is not necessarily obvious (especially to others) when we do something the problem that it is causing, or going to cause.
Because of this perception problem on the part of others, and the fact that they are used to programmes for people without our abnormal response to exercise, physio or GET can be a dangerous thing to promote for ME/CFS.
There is an underlying assumption in the promotion of GET (or even GET-lite) that patients are doing too little. In my experience it is extremely rare for patients to do less than they can (I cannot think of anyone I have come across that was doing less than they could). If anything the tendency is towards overdoing it. This is not because patients have a behavioural problem but because of the delayed (bad) reaction to overdoing it which makes it difficult to judge what is safe and what isn't, and the pressure people are under to do things. This pressure to do more than one can happens either because of the promotion of false ideas about our illness, including the promotion of GET, or because patients cannot get basic help from the state or friends and family (because of the lack of understanding, which is partly the result of the promotion of GET which encourages the "you just need to get out more and do more" nonsense).
I would have a problem with the use of the word recovery. Once someone is sick for a few years it seems the prospects of recovery are poor, though they might improve substantially. If any group or individual is going to use a word meaning improvement, they should just say something like improvement, substantial improvement, or remission (if symptom free). It is not unusual for people to improve a lot, and even be asymptomatic but to relapse again later, so recovery as a description is often inaccurate.
Also if they wrote something this way it could make it look like the patient can definitely recover through pacing, which is not the case. It might also look like it is the fault of the patient if they do not recover through pacing (as they can argue that it wasn't done right, a bit like the GET people argue that the GET wasn't done right if it doesn't work for someone). This idea that one can definitely, or most likely, recover through pacing can play into the hands of the behaviourists (as it has done in the UK). It can also encourage the idea that there is no need for drugs or research as we can all recover if we pace ourselves.
Edit: I do think pacing seems to help some people improve a lot, possibly by giving their bodies the space to heal, but there is no guarantee of this.
Orla
Just a few more comments.
Hi tina and all, I don't think the basic concept underlying the advice needs to be that different. No matter what level one is at one should try to avoid activity which exaccerbates symptoms. The basic principles of Pacing (I mean the proper old fashioned kind) are exactly the same no matter what level one is at. Obviously the particular difficulties one is facing are different depending on situation and severity, but the basic concept is the same: try to stay within your limits; try not to push through the symptoms; vary activity according to the severity of symptoms and how you are reacting to particular activities; and if you feel really sick after doing something it may have been too much so try doing a bit less the next time. If you feel up to it, or if you think you have improved a bit, every now and again test your limits, but not too much (in case you miscalcuated the degree of improvement) and not to the extent that you aggravate symptoms.
The vast majority of patients increase naturally as they improve. They don't need to be told to do more. If anything this point needs to be emphasised more, rather than emphasising exercise.
Most patient won't need a formal programme of activity (which can turn into GET very easily, or make pacing difficult if one is paying more attention to targets and timetables than how one feels). I think programmes also give the illusion of control and the illusion of treating the condition, so it is understandably attractive to doctors and patients alike, but it doesn't mean they are effective. Some doctors suggest not increasing, or increasing much until one starts to feel a lot better, and then to test out doing things. Unfortunately it is all a bit of a guessing game at the moment without a clear understanding of the underlying pathophysiology, and without patients getting regular testing to check how they are doing or reacting to any programmes or treatments.
As others (including Tina I think) have said they could give some warnings about he problems with aerobic activity.
One important thing can be energy saving tips. I still come across ideas that are new to me so these can be surprisingly helpful. Sometimes even though some of these tips can be simple and "obvious" one may not think of them when one needs them. Patients often also have interesting tactics they have come up with to get around problems (eg. invloving parenting, schooling, housing, work-related problems).
Was that in a section where they were talking about people who were improving? Or just a general comment. It looks a bit worrying, either way to be honest.
Pacing and GET are 2 diferent things. An increase in activity should generally only be done, in my opinion, if one is improving. But again it shouldn't be graded as such as that gets the patient into programmes, and levels, and targets and the patient will feel under pressure to maintain a level and reluctant, to drop down levels if they feel worse.
In ME/CFS Pacing is going to involve fluctuating activity levels because of the nature of the condition. This is one of the problems with GET, or the concept of graded activity, it doesn't really fit with fluctuations in symptoms which in ME/CFS can vary a bit from day to day, or over the course of the year.
Orla
Hi tina and all, I don't think the basic concept underlying the advice needs to be that different. No matter what level one is at one should try to avoid activity which exaccerbates symptoms. The basic principles of Pacing (I mean the proper old fashioned kind) are exactly the same no matter what level one is at. Obviously the particular difficulties one is facing are different depending on situation and severity, but the basic concept is the same: try to stay within your limits; try not to push through the symptoms; vary activity according to the severity of symptoms and how you are reacting to particular activities; and if you feel really sick after doing something it may have been too much so try doing a bit less the next time. If you feel up to it, or if you think you have improved a bit, every now and again test your limits, but not too much (in case you miscalcuated the degree of improvement) and not to the extent that you aggravate symptoms.
The vast majority of patients increase naturally as they improve. They don't need to be told to do more. If anything this point needs to be emphasised more, rather than emphasising exercise.
Most patient won't need a formal programme of activity (which can turn into GET very easily, or make pacing difficult if one is paying more attention to targets and timetables than how one feels). I think programmes also give the illusion of control and the illusion of treating the condition, so it is understandably attractive to doctors and patients alike, but it doesn't mean they are effective. Some doctors suggest not increasing, or increasing much until one starts to feel a lot better, and then to test out doing things. Unfortunately it is all a bit of a guessing game at the moment without a clear understanding of the underlying pathophysiology, and without patients getting regular testing to check how they are doing or reacting to any programmes or treatments.
As others (including Tina I think) have said they could give some warnings about he problems with aerobic activity.
One important thing can be energy saving tips. I still come across ideas that are new to me so these can be surprisingly helpful. Sometimes even though some of these tips can be simple and "obvious" one may not think of them when one needs them. Patients often also have interesting tactics they have come up with to get around problems (eg. invloving parenting, schooling, housing, work-related problems).
Was that in a section where they were talking about people who were improving? Or just a general comment. It looks a bit worrying, either way to be honest.
Pacing and GET are 2 diferent things. An increase in activity should generally only be done, in my opinion, if one is improving. But again it shouldn't be graded as such as that gets the patient into programmes, and levels, and targets and the patient will feel under pressure to maintain a level and reluctant, to drop down levels if they feel worse.
In ME/CFS Pacing is going to involve fluctuating activity levels because of the nature of the condition. This is one of the problems with GET, or the concept of graded activity, it doesn't really fit with fluctuations in symptoms which in ME/CFS can vary a bit from day to day, or over the course of the year.
Orla
re counselling
Sorry for posting 3 (opinionated) posts in a row. I am afraid I will forget my points if I don't post now.
About counselling, one thing that would worry me is that this could also be over-pushed. Maybe not as bad as over-pushing CBT, but still a problem. If it is going to mentioned it should be emphasised that some patients may find it useful some of the time to help come to terms with the changes in their life brought about by a chronic disabling illness. I think that counselling can be helpful some of the time, but one has to have some energy for it and be in the right frame of mind for it also. And the person needs to feel comfortable with the counsellor.
I have gone to counselling myself but did not go in the very early stages of my illness. I think I would not have found it useful intitally, because I was in a different frame of mind at the early stages of my illness. I thought I was going to get better fairly quickly, and so I adjusted to the situation well, but as a temporary one (so I was not too worried about longer-term issues). I also would not have been well enough initially for counselling. It was only when it became obvious that it was going to go on for longer than I originally had thought that it became more obviously necessary to adjust to the situation on a longer-term basis (although I had no idea how long it would go on for at that stage) and that realisation was somewhat stressful, so that was where counselling was helpful.
Another thing possibly worth mentioning, if they were mentioning counselling or any sort of psychological support, is that it would probably be better to go to someone who accepted the physical aspects of the condition, the physical limitations and so on. On top of this, some counsellors seem to specialise a bit in counselling people with physical disabilities, and/or some have seen a lot of people with physical disabilities, so they might be more suitable (if the person with ME/CFS gets along with them).
My counsellor had this background, so I don't know what it would be like to go to one who didn't have this background. But I did feel it was helpful as I felt he "got" some things without me having to spend too much energy explaining them. I also wonder if some counsellors who were not used to dealing with people with physical disabilities might either react with incredulity to certain things (the way healthy people do) or they might put too many things down to "stress" and not understand the degree of impact the illness had one one's day to day functioning. The illness also limits the choices one can make in how to deal with problems.
Orla
Sorry for posting 3 (opinionated) posts in a row. I am afraid I will forget my points if I don't post now.
About counselling, one thing that would worry me is that this could also be over-pushed. Maybe not as bad as over-pushing CBT, but still a problem. If it is going to mentioned it should be emphasised that some patients may find it useful some of the time to help come to terms with the changes in their life brought about by a chronic disabling illness. I think that counselling can be helpful some of the time, but one has to have some energy for it and be in the right frame of mind for it also. And the person needs to feel comfortable with the counsellor.
I have gone to counselling myself but did not go in the very early stages of my illness. I think I would not have found it useful intitally, because I was in a different frame of mind at the early stages of my illness. I thought I was going to get better fairly quickly, and so I adjusted to the situation well, but as a temporary one (so I was not too worried about longer-term issues). I also would not have been well enough initially for counselling. It was only when it became obvious that it was going to go on for longer than I originally had thought that it became more obviously necessary to adjust to the situation on a longer-term basis (although I had no idea how long it would go on for at that stage) and that realisation was somewhat stressful, so that was where counselling was helpful.
Another thing possibly worth mentioning, if they were mentioning counselling or any sort of psychological support, is that it would probably be better to go to someone who accepted the physical aspects of the condition, the physical limitations and so on. On top of this, some counsellors seem to specialise a bit in counselling people with physical disabilities, and/or some have seen a lot of people with physical disabilities, so they might be more suitable (if the person with ME/CFS gets along with them).
My counsellor had this background, so I don't know what it would be like to go to one who didn't have this background. But I did feel it was helpful as I felt he "got" some things without me having to spend too much energy explaining them. I also wonder if some counsellors who were not used to dealing with people with physical disabilities might either react with incredulity to certain things (the way healthy people do) or they might put too many things down to "stress" and not understand the degree of impact the illness had one one's day to day functioning. The illness also limits the choices one can make in how to deal with problems.
Orla
GREAT IDEA! Count me in as a reviewer.
A perfect example if the March newsletter. That would have never made it through a review such as this.
Otis
Dr. Yes
Shame on You
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Absolutely right, Orla. I for one was not suggesting replacing an emphasis on CBT with an equal emphasis on counseling. Professional psychological support of any kind should only be recommended as a potentially supportive therapy to those PWC who are having difficulty emotionally coping with their illness.
In contrast, a major thrust of CBT as it has been 'adapted' for us is to help us "physically cope" with the illness by removing our "unhelpful thoughts" about it. The idea that we have these "unhelpful thoughts", let alone "false illness beliefs", is an assumption that has not been scientifically validated. Why endorse it at all, then, if it is based on mere speculation by people who have little or no real understanding of our disease?
In contrast, a major thrust of CBT as it has been 'adapted' for us is to help us "physically cope" with the illness by removing our "unhelpful thoughts" about it. The idea that we have these "unhelpful thoughts", let alone "false illness beliefs", is an assumption that has not been scientifically validated. Why endorse it at all, then, if it is based on mere speculation by people who have little or no real understanding of our disease?
I agree this could be useful. But I think I am right in saying that it would be a slightly different model. Up to now, it appears they have seen the health and medical professionals as the experts (or am I wrong in that?).
As I have said, I think there can be problems with this approach with ME/CFS - patients (and people who live with them) can have a "sensitive nose" to pieces on management issues e.g. lots of us would like the choice not to use our precious energy on exercise programs if we so choose.
Although having a professionals seal of approval/name on something can give it more standing so can see the dilemma. Probably a piece written/approved by a team (as published papers are) can be useful.
Yes, to me they generally can often have many false illness beliefs, etc and generally could be said to qualify as candidates for a form of CBT.
usedtobeperkytina
Senior Member
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- Clay, Alabama
I read most of this in a CDC study.....
Gotcha. Just kidding. LOL Come on guys, we have to have some humor in all this debate, criticism and science talk.
I really am not feeling well and I hate to look up studies, but I put my foot in it and now have been challenged. Let's see how I do.....
Ok, there is something here about improvement with chocolate...
Oh, and here is something about lightening? So is this saying that I should stand under trees?
Sorry, I am still having fun. Disregard the last two sentences.
Ok, most of the studies I am seeing say, "__________ has been shown to improve....."
There is a study I found that showed CFS patients with short duration of complaints had a more favorable outcome. (Now call me stupid, but if your illness is long duration, then how can that have a favorable outcome? Am I missing something. It's like saying those people who have paint on their face reported discoloration of the face. A person who has complaints of symptoms in a shorter duration would naturally have a more favorable outcome.) This is S. van der Werf
Anyway, I saw another that said 5% have full recovery. Improvement was seen in 39.5%. And 5-20% saw worsening symptoms. These had no treatment, I think. I know you all likely are familiar with this study. It is Professor M. Totopf, published in Occupationall Medicine in 2005.
CAA says on their Web site, "Based on limited research data available, it appears that the majority of patients with CFS improve within five years of becoming ill." and... "Based on statistical data from the Centers for Disease Control and Prevention, if symptoms last for five years, it is unlikely that the illness will improve significantly in subsequent years."
So I bet you will say these are questionable studies. Given the varying criteria for CFS, can we trust any study that says a percentage will see improvement, even if it says 0%? I give up. Until we know what CFS is and all studies use the same criteria, we can't trust any of them.
I am getting frustrated by all the efforts to pin anything down in such ambiguity and controversy with this illness. No wonder so many don't want to get involved in studies or treatment.
I guess what I can go on, which is not suitable for publication, is my own experience and the reports of others and clinicians specializing. I trust Klimas, Komaroff, Peterson, and the like that they know what CFS is and what it isn't.
I have a friend who has CFS. She gradually recovered over many years to the point of working part time. She had to rest after she got home, but she could work. She got pneumonia and relapsed and had to quite work.
I guess I just hear those stories so often, and it was my experience, that I thought it was accepted, given, that a percentage recovered (small percentage) or improved (larger percentage). With some (small percentage) that never make any improvement.
So, Dr. Yes, I don't have anything that we can all agree is credible to refute this statement you made:
"A few have reported improvement in such programs, but nowhere near "most", and the scientific validity of many of these trials is questionable."
And this is what I meant:
"as many people have at various times regained some or a great deal of their previous health, and a fortunate few appear to have entirely recovered."
So I guess I failed to find a study that we could all agree on that says some or a majority (over 50%) people see some improvement.
I think the debate is whether the improvement is a result of increasing levels of body activity. I guess we can say that there is no consensus or unquestionable study that shows this. As I said, any study that did would bring up the issue as to whether they actually had true CFS.
So any statements on body activity at this point should not be under treatment. I think this is where I made my mistake in the earlier post. But such statements should be under lifestyle adjustments.
I think the difference also, from what I understand of the UK promoted GET, is that you push past the point of fatigue, which is absolutely not what I am saying at all. I am saying opposite. Pace to stay within the "envelope." And don't push to point of feeling fatigue. But your point that even that has not been proven to have an effect is well taken. Just as one could say it is the body activity that makes for improvement. Another could say it is the rest periods in between that actually makes for some improvement.
And even if there is improvment. There would have to be study of some people not doing any body activity and others doing regular exercise as a healthy person does to see how those who pace and increase within their envelope do in order to show it causes improvement beyond either of the other two options.
I saw the GP training video where the woman said the patient needs to push beyond the fatigue to see that their symptoms are not caused by the exercise. This is what we have to fight.
Whereas it would be nice to just not mention body activity, we have to because of such misinformation. So maybe under a lifestyle adjustments it could mention activity, however small in the beginning, to prevent atrophy, but not push and include periods of rest. So take the earlier recommendations of what could be in such literature and put it under lifestyle adjustments instead of under how to improve or treatment.
I think the push through fatigue message is much stronger in UK than here.
Sorry if this is not well-thought out post. I am not at my best.
In the end, you guys were right and I spoke beyond what the science shows or I put the comments in the wrong category.
Tina
Gotcha. Just kidding. LOL Come on guys, we have to have some humor in all this debate, criticism and science talk.
I really am not feeling well and I hate to look up studies, but I put my foot in it and now have been challenged. Let's see how I do.....
Ok, there is something here about improvement with chocolate...
Oh, and here is something about lightening? So is this saying that I should stand under trees?
Sorry, I am still having fun. Disregard the last two sentences.
Ok, most of the studies I am seeing say, "__________ has been shown to improve....."
There is a study I found that showed CFS patients with short duration of complaints had a more favorable outcome. (Now call me stupid, but if your illness is long duration, then how can that have a favorable outcome? Am I missing something. It's like saying those people who have paint on their face reported discoloration of the face. A person who has complaints of symptoms in a shorter duration would naturally have a more favorable outcome.) This is S. van der Werf
Anyway, I saw another that said 5% have full recovery. Improvement was seen in 39.5%. And 5-20% saw worsening symptoms. These had no treatment, I think. I know you all likely are familiar with this study. It is Professor M. Totopf, published in Occupationall Medicine in 2005.
CAA says on their Web site, "Based on limited research data available, it appears that the majority of patients with CFS improve within five years of becoming ill." and... "Based on statistical data from the Centers for Disease Control and Prevention, if symptoms last for five years, it is unlikely that the illness will improve significantly in subsequent years."
So I bet you will say these are questionable studies. Given the varying criteria for CFS, can we trust any study that says a percentage will see improvement, even if it says 0%? I give up. Until we know what CFS is and all studies use the same criteria, we can't trust any of them.
I am getting frustrated by all the efforts to pin anything down in such ambiguity and controversy with this illness. No wonder so many don't want to get involved in studies or treatment.
I guess what I can go on, which is not suitable for publication, is my own experience and the reports of others and clinicians specializing. I trust Klimas, Komaroff, Peterson, and the like that they know what CFS is and what it isn't.
I have a friend who has CFS. She gradually recovered over many years to the point of working part time. She had to rest after she got home, but she could work. She got pneumonia and relapsed and had to quite work.
I guess I just hear those stories so often, and it was my experience, that I thought it was accepted, given, that a percentage recovered (small percentage) or improved (larger percentage). With some (small percentage) that never make any improvement.
So, Dr. Yes, I don't have anything that we can all agree is credible to refute this statement you made:
"A few have reported improvement in such programs, but nowhere near "most", and the scientific validity of many of these trials is questionable."
And this is what I meant:
"as many people have at various times regained some or a great deal of their previous health, and a fortunate few appear to have entirely recovered."
So I guess I failed to find a study that we could all agree on that says some or a majority (over 50%) people see some improvement.
I think the debate is whether the improvement is a result of increasing levels of body activity. I guess we can say that there is no consensus or unquestionable study that shows this. As I said, any study that did would bring up the issue as to whether they actually had true CFS.
So any statements on body activity at this point should not be under treatment. I think this is where I made my mistake in the earlier post. But such statements should be under lifestyle adjustments.
I think the difference also, from what I understand of the UK promoted GET, is that you push past the point of fatigue, which is absolutely not what I am saying at all. I am saying opposite. Pace to stay within the "envelope." And don't push to point of feeling fatigue. But your point that even that has not been proven to have an effect is well taken. Just as one could say it is the body activity that makes for improvement. Another could say it is the rest periods in between that actually makes for some improvement.
And even if there is improvment. There would have to be study of some people not doing any body activity and others doing regular exercise as a healthy person does to see how those who pace and increase within their envelope do in order to show it causes improvement beyond either of the other two options.
I saw the GP training video where the woman said the patient needs to push beyond the fatigue to see that their symptoms are not caused by the exercise. This is what we have to fight.
Whereas it would be nice to just not mention body activity, we have to because of such misinformation. So maybe under a lifestyle adjustments it could mention activity, however small in the beginning, to prevent atrophy, but not push and include periods of rest. So take the earlier recommendations of what could be in such literature and put it under lifestyle adjustments instead of under how to improve or treatment.
I think the push through fatigue message is much stronger in UK than here.
Sorry if this is not well-thought out post. I am not at my best.
In the end, you guys were right and I spoke beyond what the science shows or I put the comments in the wrong category.
Tina
Thanks very much for your kind and supportive words, IF.
One small addition to my previous post: As well as the responsibilities/activities I mentioned (and you allude to), another demand on people may be educational courses of one sort or another.
Tom
(who is wishing he didn't eat as much chocolate today as he did!)
So, these past few pages have got me thinking. I have followed the literature, the research, the ideas for years and I have heard the histories of many people so I ask myself what would be good advice for living with ME. (I don't know so much about CSF. The "knowledge base" of CSF differs from ME even if it is the same disease. There is a different way of looking at it but this forum is interesting because of the way similarities are being highlighted.)
Firstly and most importantly, I don't think activity programmes or exercise regimes have any place in management except as a footnote. It is not a case of which sort we should have but why have one at all.
For a while, there was quite a stir when Dr Bruno felt that ME and post polio syndrome were indistinguishable. With ME being most likely enteroviral this made complete sense. The point of both was that they got worse with activity. The answer was to limit activity to the most essential. He felt that wheelchairs, stairlifts etc should be used as a first choice so that other things could be done. If you need to stand and cook save your energy for that by not climbing stairs. Whether there is any connection with post polio syndrome, the idea seems to have been dropped as PPS became more mainstream, this system, of management struck me as being the right way to go with ME.
So a patient with ME should be told to REST as much as possible. If counselling is needed for anything it is to help patients look at their life and see how they can simplify it. As was said, lots of us have found ways to use less energy while doing the activities of living. I can do much more now because I have worked out easy ways to do things. In general this probably means LESS walking :Retro smile: Time off work, walking frames with seats or other aids, an OT assessment of your home, a bus pass; these sort of things should be given as needed, the exact opposite of what happens now.
A document on the CAA website which is full of energy saving ideas would be of great practical benefit.
As Orla said, a patient may exist somewhere who does too little but I have never met one either. We are all forced to live such limited lives we are champing at the bit to do something. How many of us do things which we know will make us feel bad simply because we are bored to distraction. It is people with depression who need chivvied to do things.
Secondly, we do NOT get worse simply because we have done too much. The illness has its own rhythm. What causes it I do not know. In women the hormone cycle definitely plays a part; it could be what we eat; it could be viral replication or sunshine, no one has ever looked. Many illnesses flare up and die down naturally.
The idea that "boom and bust" plays a part is overstated and is another subtle way of blaming the patient. It is used by the psyches as a way of getting out of our objections to their theories. We say "But I am not deconditioned I do quite a lot" and they can use this as a confirmation of their theories instead of the proof their theories are wrong that it actually is (Sorry found that sentence hard to do!)
Some days I feel better and can do more without it causing a crash as long as I temper it and don't go crazy. Basically I have worked out that if I have a doubt about doing something I don't do it. If I am well enough to do it I usually already am without thinking. Even after all these years I don't do what the psyches accuse us of, I'm never not doing anything because I am afraid of the results of activity.
It is being forced to do things when we don't feel well enough that causes the most problems. I am very limited, the "feeling better" is comparative. What has done for me is a continual overdoing because life demanded it. As an example a doctor treating me properly would have arranged for nursery places for my children - a friend with MS had a taxi provided to take her children to school. That should be done for people with ME so they can interact with their kids in a more meaningful way by reading a story at bedtime say rather than being too exhausted by then.
We could do with a blood test for our illness to sort out who has it and needs this sort of help, but until then we need good diagnostic advice. This means using at least the CC. It is simple to tell the ones who definitely have it, the borderline cases are always tricky, so while we want to include everyone we should not put of helping those who definitely have it because there is a doubt about borderline cases. Having a list of all the symptoms and how many have them would be useful. Derek Pheby wanted to do an epidemiological study to see what symptoms patients actually HAD and to see if there was a pattern to them. he was refused as it was deemed unnecessary......
When they are diagnosed there should be a good effort made to minimise their energy usage to within their "envelope" to prevent any secondary damage and to slow the disease progression if at all possible. This might even lead to recovery as recovery is most possible in the first few years.
If the CAA is truly an organisation for patients then they are ideally placed to have a plan which contains what WE feel would help patients. It may not be possible to get it adopted by the medical profession but it would give a starting point for research and a roadmap for the way we want to go.
Many of us on this forum would be more than willing to help with such a thing.
Mithriel
Firstly and most importantly, I don't think activity programmes or exercise regimes have any place in management except as a footnote. It is not a case of which sort we should have but why have one at all.
For a while, there was quite a stir when Dr Bruno felt that ME and post polio syndrome were indistinguishable. With ME being most likely enteroviral this made complete sense. The point of both was that they got worse with activity. The answer was to limit activity to the most essential. He felt that wheelchairs, stairlifts etc should be used as a first choice so that other things could be done. If you need to stand and cook save your energy for that by not climbing stairs. Whether there is any connection with post polio syndrome, the idea seems to have been dropped as PPS became more mainstream, this system, of management struck me as being the right way to go with ME.
So a patient with ME should be told to REST as much as possible. If counselling is needed for anything it is to help patients look at their life and see how they can simplify it. As was said, lots of us have found ways to use less energy while doing the activities of living. I can do much more now because I have worked out easy ways to do things. In general this probably means LESS walking :Retro smile: Time off work, walking frames with seats or other aids, an OT assessment of your home, a bus pass; these sort of things should be given as needed, the exact opposite of what happens now.
A document on the CAA website which is full of energy saving ideas would be of great practical benefit.
As Orla said, a patient may exist somewhere who does too little but I have never met one either. We are all forced to live such limited lives we are champing at the bit to do something. How many of us do things which we know will make us feel bad simply because we are bored to distraction. It is people with depression who need chivvied to do things.
Secondly, we do NOT get worse simply because we have done too much. The illness has its own rhythm. What causes it I do not know. In women the hormone cycle definitely plays a part; it could be what we eat; it could be viral replication or sunshine, no one has ever looked. Many illnesses flare up and die down naturally.
The idea that "boom and bust" plays a part is overstated and is another subtle way of blaming the patient. It is used by the psyches as a way of getting out of our objections to their theories. We say "But I am not deconditioned I do quite a lot" and they can use this as a confirmation of their theories instead of the proof their theories are wrong that it actually is (Sorry found that sentence hard to do!)
Some days I feel better and can do more without it causing a crash as long as I temper it and don't go crazy. Basically I have worked out that if I have a doubt about doing something I don't do it. If I am well enough to do it I usually already am without thinking. Even after all these years I don't do what the psyches accuse us of, I'm never not doing anything because I am afraid of the results of activity.
It is being forced to do things when we don't feel well enough that causes the most problems. I am very limited, the "feeling better" is comparative. What has done for me is a continual overdoing because life demanded it. As an example a doctor treating me properly would have arranged for nursery places for my children - a friend with MS had a taxi provided to take her children to school. That should be done for people with ME so they can interact with their kids in a more meaningful way by reading a story at bedtime say rather than being too exhausted by then.
We could do with a blood test for our illness to sort out who has it and needs this sort of help, but until then we need good diagnostic advice. This means using at least the CC. It is simple to tell the ones who definitely have it, the borderline cases are always tricky, so while we want to include everyone we should not put of helping those who definitely have it because there is a doubt about borderline cases. Having a list of all the symptoms and how many have them would be useful. Derek Pheby wanted to do an epidemiological study to see what symptoms patients actually HAD and to see if there was a pattern to them. he was refused as it was deemed unnecessary......
When they are diagnosed there should be a good effort made to minimise their energy usage to within their "envelope" to prevent any secondary damage and to slow the disease progression if at all possible. This might even lead to recovery as recovery is most possible in the first few years.
If the CAA is truly an organisation for patients then they are ideally placed to have a plan which contains what WE feel would help patients. It may not be possible to get it adopted by the medical profession but it would give a starting point for research and a roadmap for the way we want to go.
Many of us on this forum would be more than willing to help with such a thing.
Mithriel
Roy S
former DC ME/CFS lobbyist
- Messages
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- Location
- Illinois, USA
Kim is in her 20th year now. If I understand it correctly she sits on all the permanent committees and the nominating committee is a permanent committee.
Some of what I wrote is scattered around this web site, but it is all in one place there. 15 years ago I thought about hiring a professional writer to help me write a book to stimulate effective advocacy. It would have been ignored. I'm glad I didn't waste my time.
It's incredible to me that after all these years patients are still trying to get the CAA to do things that they should have done a long time ago, especially like not putting out potentially damaging information. I think there are now three psychologists on the board and all this effort is being put into CBT GET, etc. I won't be in the cheering section if they do change something that should never have been done in the first place. It's not my nature, but color me cynicalabout this after all these years. It's no wonder so many people have dropped out.
biophile
Places I'd rather be.
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Ignorance as a major factor in a negative ME/CFS outcome
The recommendation of "push beyond the fatigue to see that their symptoms are not caused by the exercise" is a clear sign they don't understand the disease. Many patients have (over)exerted themselves in the earlier stages of illness to maintain a normal life because they were told nothing was wrong with them, and ended up worse or permanently affected.
It is the beliefs, attitudes and actions of such biopsychosocialists/psychologisers which fuels the environment that encouraged or coerced people to ignore the implications of their symptoms in the first place. I'm sure the above has been said many times already, but I'd like to add my opinion it is perhaps their ignorance and ideology which is the most important “psychosocial factor” for many cases of ME and/or CFS.
I read somewhere: (1) about 50% of patients defined by CDC criteria do not experience post-exertional malaise, (2) 50% of patients defined by CDC report improvements with GET. Coincidence? I think some researchers claim their GET studies included people with substantial post-exertional symptom exacerbation, but considering they don't seem to believe the reality of it yet alone actually understand it or even require it from their patients to participate in trials, I have trouble trusting their word on the issue.
The recommendation of "push beyond the fatigue to see that their symptoms are not caused by the exercise" is a clear sign they don't understand the disease. Many patients have (over)exerted themselves in the earlier stages of illness to maintain a normal life because they were told nothing was wrong with them, and ended up worse or permanently affected.
It is the beliefs, attitudes and actions of such biopsychosocialists/psychologisers which fuels the environment that encouraged or coerced people to ignore the implications of their symptoms in the first place. I'm sure the above has been said many times already, but I'd like to add my opinion it is perhaps their ignorance and ideology which is the most important “psychosocial factor” for many cases of ME and/or CFS.
I read somewhere: (1) about 50% of patients defined by CDC criteria do not experience post-exertional malaise, (2) 50% of patients defined by CDC report improvements with GET. Coincidence? I think some researchers claim their GET studies included people with substantial post-exertional symptom exacerbation, but considering they don't seem to believe the reality of it yet alone actually understand it or even require it from their patients to participate in trials, I have trouble trusting their word on the issue.