Thanks for your comments @Woolie I had been thinking too much about the C in CBT and not the part trying to either cause of break conditioned responses.
About the last bit about dwelling, good point.
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Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time
- Thread starter Orla
- Start date
Thanks for your comments @Woolie I had been thinking too much about the C in CBT and not the part trying to either cause of break conditioned responses.
About the last bit about dwelling, good point.
Main problems with the way Graded Exercise is promoted
I think a real problem with the promotion of Graded Exercise for ME/CFS in general, is that those who promote it often don't warn of any potential harm. They don't think that there is any limit to the level patients can increase to, and they might want patients to stick to the programme, even if they feel worse, or have a bad day. This is because they think there is no underlying physical disease that can be made worse through exercise.
They might also not make any distinction between people at the early stages of ME/CFS, or those who are severe or in relapse, and other people who are doing a lot better and seem to be getting better naturally. This last group of patients might be able to try to increase their activities a bit over time, though they might already be doing this naturally so not need a “programme” to do it.
There is a very small number of patients who may be doing less than they could because of becoming depressed. In this situation, the depression should be dealt with, but the patient will still need to pace themselves because of the ME.
Another problem worth mentioning here is that if doctors, scientists, and government policy makers think Graded Exercise will basically cure us, they will lose interest in looking for the real cause and cure of ME/CFS. They will also be inclined to put the onus on the patient to get themselves better, and blame them if they don’t.
Unfortunately Joe Fitzgibbon, in his book, reflects a lot of the problems I would have with the promotion of Graded Exercise for ME/CFS. He doesn't warn about the potential dangers of Graded Exercise programmes. He argues for the patients to stick to the exercise programme even on bad days. He doesn't seem to think that there is a limit to what level of activity patients can achieve. This might encourage the patient to try to push through their limit, as they might think there is no real limit to what they can do.
He seems to want pretty much everyone with ME/CFS to go on a graded exercise programme, no matter what stage of illness, or level of severity they are at. There is a presumption in the book that all ME/CFS patients can increase their activities. In reality, many patients will already be as active as they can be, and won’t be able to add an exercise programme on to what they are already doing. Some patients will get a lot better, or be after improving a lot and be fairly stable, and might feel up to doing a bit of mild exercise. But, even then, they will probably need to decrease exercise on bad days, so not be doing graded exercise strictly speaking.
Because of reports of so many people with ME/CFS having adverse reactions to Graded Exercise, I think that anything that gives the impression that ME/CFS patients can just keep increasing activity, via a set exercise programme, needs to be approached with caution. Maybe in the future, when more information is known about ME/CFS, activity programmes will be done in a more scientific and safe way. Of course, if there is proper treatment, maybe all this focus on graded exercise will die out. We might just get treated like patients with many other conditions, where they get sick, get a treatment, and get better. But at the moment I think the best we can do is to warn patients of the potential pit-falls of strict Graded Exercise programmes.
I think a real problem with the promotion of Graded Exercise for ME/CFS in general, is that those who promote it often don't warn of any potential harm. They don't think that there is any limit to the level patients can increase to, and they might want patients to stick to the programme, even if they feel worse, or have a bad day. This is because they think there is no underlying physical disease that can be made worse through exercise.
They might also not make any distinction between people at the early stages of ME/CFS, or those who are severe or in relapse, and other people who are doing a lot better and seem to be getting better naturally. This last group of patients might be able to try to increase their activities a bit over time, though they might already be doing this naturally so not need a “programme” to do it.
There is a very small number of patients who may be doing less than they could because of becoming depressed. In this situation, the depression should be dealt with, but the patient will still need to pace themselves because of the ME.
Another problem worth mentioning here is that if doctors, scientists, and government policy makers think Graded Exercise will basically cure us, they will lose interest in looking for the real cause and cure of ME/CFS. They will also be inclined to put the onus on the patient to get themselves better, and blame them if they don’t.
Unfortunately Joe Fitzgibbon, in his book, reflects a lot of the problems I would have with the promotion of Graded Exercise for ME/CFS. He doesn't warn about the potential dangers of Graded Exercise programmes. He argues for the patients to stick to the exercise programme even on bad days. He doesn't seem to think that there is a limit to what level of activity patients can achieve. This might encourage the patient to try to push through their limit, as they might think there is no real limit to what they can do.
He seems to want pretty much everyone with ME/CFS to go on a graded exercise programme, no matter what stage of illness, or level of severity they are at. There is a presumption in the book that all ME/CFS patients can increase their activities. In reality, many patients will already be as active as they can be, and won’t be able to add an exercise programme on to what they are already doing. Some patients will get a lot better, or be after improving a lot and be fairly stable, and might feel up to doing a bit of mild exercise. But, even then, they will probably need to decrease exercise on bad days, so not be doing graded exercise strictly speaking.
Because of reports of so many people with ME/CFS having adverse reactions to Graded Exercise, I think that anything that gives the impression that ME/CFS patients can just keep increasing activity, via a set exercise programme, needs to be approached with caution. Maybe in the future, when more information is known about ME/CFS, activity programmes will be done in a more scientific and safe way. Of course, if there is proper treatment, maybe all this focus on graded exercise will die out. We might just get treated like patients with many other conditions, where they get sick, get a treatment, and get better. But at the moment I think the best we can do is to warn patients of the potential pit-falls of strict Graded Exercise programmes.
Work and ME/CFS
If you are struggling to cope at work don't expect much sympathy from this book. Dr. Joe Fitzgibbon argues strongly for people to stay at work even if they are really struggling. He mentions problems people with ME/CFS experience at work including e.g.
This approach can be very risky for people with ME/CFS. If people with ME/CFS continue to try to ignore the symptoms and push through them, they can make themselves worse in the long-run.
Some people (who are frankly dense, or in some cases coming from a particular ideological perspective) think that because there is a correlation between severity and being out of work, and often on benefits, that this shows that work helps people maintain functionality, and that work reduces disability. Personally I think there is usually a more obvious explanation. These statistics merely reflect that the sicker, more disabled, people are not working because they are sicker. I know there might be some exceptions to the rule with mild mental conditions, but I don't think this applies to ME/CFS patients.
Fitzgibbon claims that:
What he is talking about makes no sense in terms of ME/CFS. If you push through the symptoms in ME/CFS you only make them worse. Not pushing through, and pacing yourself, seems much more likely to reduce symptoms in the long-run.
He also wants people who have stopped working to get back to work:
If you are struggling to cope at work don't expect much sympathy from this book. Dr. Joe Fitzgibbon argues strongly for people to stay at work even if they are really struggling. He mentions problems people with ME/CFS experience at work including e.g.
In other words work is aggravating their condition. But he still goes argues that people with ME/CFS should keep working even in these circumstances.
and
This approach can be very risky for people with ME/CFS. If people with ME/CFS continue to try to ignore the symptoms and push through them, they can make themselves worse in the long-run.
Some people (who are frankly dense, or in some cases coming from a particular ideological perspective) think that because there is a correlation between severity and being out of work, and often on benefits, that this shows that work helps people maintain functionality, and that work reduces disability. Personally I think there is usually a more obvious explanation. These statistics merely reflect that the sicker, more disabled, people are not working because they are sicker. I know there might be some exceptions to the rule with mild mental conditions, but I don't think this applies to ME/CFS patients.
Fitzgibbon claims that:
What he is talking about makes no sense in terms of ME/CFS. If you push through the symptoms in ME/CFS you only make them worse. Not pushing through, and pacing yourself, seems much more likely to reduce symptoms in the long-run.
He also wants people who have stopped working to get back to work:
But this is not realistic for many.
The "sick role"
One reason he is claiming that a return to work is important is that, through this,
He also doesn’t like signing people off on a pension because of having to sign them off as permanently incapacitated (I can understand this for the first few years, but sometimes it is obvious that someone is not getting better. I think it does depend to some extent on age, severity, and whether they are showing any signs of improvement). He says:
I have never met anyone who feels they are permanently sick or disabled just because they are on disability. When/if people get better they start doing normal activities like work again. However, practically speaking, if someone has been sick for a very long time, is pretty severe, and not showing any signs of recovery, the odds of them fully recovery may be low. He claims that
He does suggest a compromise position, of having the person on a pension with annual medical reviews. This could be reasonable in some cases, but in others it could lead to the regular stress of being questioned and possibly having to fight one's corner every year, depending on how doctors were interpreting your condition, and how permanent they saw your illness as.
But it is interesting to compare his view that most recover, and actual recovery estimates from elsewhere. Most seem to suggest that the 'recovery' rate is low (which is not to say that some won't improve a lot over time). Some use the word remission instead of recovery, as sometimes people think they have fully recovered only to relapse later, or they might never fully get rid of symptoms, even if they are a lot better. The Centre for Disease Control in Atlanta (US) writes: "full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission" (I wrote this a good few years ago. I haven't checked whether this is what is still on their website).
One reason he is claiming that a return to work is important is that, through this,
which I just find offensive. Being sick with ME/CFS is not a lifestyle choice or a "role".
He also doesn’t like signing people off on a pension because of having to sign them off as permanently incapacitated (I can understand this for the first few years, but sometimes it is obvious that someone is not getting better. I think it does depend to some extent on age, severity, and whether they are showing any signs of improvement). He says:
I think this is utter nonsense, and sounds like some of the rubbish I have read spouted by people working for the income insurance industry (these are companies with which people can take out insurance policies to insure themselves against loss of income due to injury or illness. They get a pension instead of their regular wage). Funnily enough I have heard that Dr Joe Fitzgibbon has done some work for the insurance industry. He sometimes assesses patients for their fitness to work. Perhaps he has been reading too many of the industry manuals?!
I have never met anyone who feels they are permanently sick or disabled just because they are on disability. When/if people get better they start doing normal activities like work again. However, practically speaking, if someone has been sick for a very long time, is pretty severe, and not showing any signs of recovery, the odds of them fully recovery may be low. He claims that
which unfortunately is untrue, and
I did read before that permanent, in terms of disability pension, in some countries is sometimes defined as expected to last for at least 5 years. I think this was in relation to the situation in Australia and I don't know if something similar applies here (I am in Ireland, I think we do have similar guidelines here on what is considered permanent for a social-welfare long-term disability pension).
He does suggest a compromise position, of having the person on a pension with annual medical reviews. This could be reasonable in some cases, but in others it could lead to the regular stress of being questioned and possibly having to fight one's corner every year, depending on how doctors were interpreting your condition, and how permanent they saw your illness as.
But it is interesting to compare his view that most recover, and actual recovery estimates from elsewhere. Most seem to suggest that the 'recovery' rate is low (which is not to say that some won't improve a lot over time). Some use the word remission instead of recovery, as sometimes people think they have fully recovered only to relapse later, or they might never fully get rid of symptoms, even if they are a lot better. The Centre for Disease Control in Atlanta (US) writes: "full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission" (I wrote this a good few years ago. I haven't checked whether this is what is still on their website).