Hutan
Senior Member
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- New Zealand
@EtherSpin My son and I saw Dr Callaghan last week. (Incidentally, at the time I had viral conjunctivitis, the outcome of having overdone things a bit last week).
Have you seen his draft booklet? That and his comments to my son and I do seem to indicate that he sees ME/CFS as pretty much chronic fatigue caused by orthostatic issues and corrected with BP drugs and exercise. He was very firm in his view that my son and I will be essentially well in a year, despite us being now 2.5 years in to this illness and statistics from numerous studies not supporting his confidence.
Here's an email I sent to him, the second of two, this one mainly about GET, which he wanted to prescribe for us. Dr O'Callaghan seems to be a nice man but I don't think he has read much about ME/CFS. When I mentioned the rituximab trials and the research that was finding antibodies related to POTS he dismissed them as things that will probably come and go as so much has before it, although my impression was that he was not previously aware of either.
Perhaps together we ME/CFS patients of his can help to inform him more, especially about GET which can do harm.
Dear Dr Callaghan,
I have now read your booklet ‘It’s not in your head’. The linking of anxiety to adrenalin to orthostatic intolerance is terrific and seems so obvious that it is a wonder all doctors do not understand that. I guess such are many good insights – obvious in retrospect. Research and dissemination of this insight and the link to stretchy tissues too will hopefully in time bring comfort and effective treatment to many more patients.
As I said, I saw your presentation at the ME/CFS conference and have since passed your insights on to other ME/CFS patients together with positive comments about you as a potentially useful,lateral thinking doctor for patients with ME/CFS.
However, in the manner of many who have a shiny new hammer, you weaken your argument by suggesting too many things are only nails. By venturing onto ME/CFS ground with a rigid prescription of exercise, you reveal a lack of knowledge in this particular area. My good opinion of you was the reason why I was a bit gobsmacked in your office when you offered a prescription for rigid GET – an approach that has been discredited as an effective treatment of ME/CFS.
I really appreciate that you responded to my letter. However I think, in your haste to reply you have missed or misunderstood most of the points I was making. I have no problem with Florinef. A prescription for that was one of the reasons we came to see you and we will of course be trying it. I do hope that you will have time to reread my letter and look at some of the references that are linked in it. I think you are a well-intentioned doctor who seeks truth and so I believe that offering some more information is not a waste of time.
There are many points I would like to cover here but I will restrict it to just a few.
1.ME/CFS
ME/CFS is different from just fatigue. It isn’t caused by deconditioning. It isn’t maintained by deconditioning (although may be exacerbated by it). ME/CFS is not fully explained by orthostatic intolerance. There is no evidence that ME/CFS goes away in older patients as their blood pressure increases or is cured by exercise and/or orthostatic intolerance drugs. Yes, stretchy tissues may be a predisposing and exacerbating factor but, as far as I know, not all patients with ME/CFS have stretchy tissues or orthostatic intolerance.
When your booklet speaks of ME/CFS, it is weak. Trying to cover drug treatments for ‘Fatigue’ (a poorly defined symptom of a wide range of medical conditions and behaviours) in only three sentences, helps no one.
2. 'Housework does not count as exercise'
A minor point but there speaks a man who probably hasn’t done much housework. How can you be suggesting 5 minutes of walking is exercise of therapeutic significance and yet ignore the exertion of, for example, vaccuuming the carpets, raking leaves or washing the car? Have a go at stripping a double bed and remaking it in a timely fashion. There are studies that have examined calories burned by various types of housework – have a look. Chat to your wife.
3.Rigidly applied GET is dangerous
Even exercise fanatics like Michelle Bridges acknowledge that, if you have a full-on cold or flu, you don’t train. You give your body a chance to fight the pathogens. The biochemically induced ‘sickness response’ that causes people with infections to seek quietness and reduce activity is an example of evolution endorsing this.
Most proponents of exercise programmes for ME/CFS patients now recognise that flexibility is important. If a patient has PEM or a secondary infection or has had to exert themselves doing some other extra activity that day, then there is no value in sticking to a pre-defined amount of additional exercise. There is potential harm, perhaps lasting harm, just as a person with the flu who pushes through a training session may do themselves harm.
Your statements that ‘Exercise must be regimented’ and that ‘over-exercise is avoided by doing an identical regimen every day’ are dangerous for healthy people, let alone people with ME/CFS, and lack nuance. If you do only one thing as a result of my letters, please do this. Read the article on exercise for ME/CFS patients by Lucinda Bateman, a very well respected expert in this specialist field. http://iacfsme.org/ME-CFS-Primer-Ed...he-Exercise-Conundrum-Lucinda-Bateman,-M.aspx
Exercise in this context is a treatment, with benefits and risks. If you are going to prescribe it for ME/CFS patients and write about it, you need to know more. A recent article by Tom Kindlon (http://www.ahmf.org/Fall2011-Kindlon-Harms-paper-59-111.pdf) on reporting of harms from exercise interventions for ME/CFS patients would be worth reading. Unless data on any harm of exercise therapy for accurately diagnosed ME/CFS patients is systematically recorded, it is not possible to make reliable statements about its safety for this patient group. As you say, your feelings about whether your ME/CFS patients have been helped or harmed by a particular kind of GET are undoubtedly biased. Most patients who find no help in what a doctor offers just move quietly on and ME/CFS patients who must carefully allocate their energy (and funds) probably do this more than most. The finding that 'high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health’ is also biased but deserves consideration alongside your own experience.
Interpreting the data that does exist is indeed complex.
For example ‘ it has been shown that satisfying the Fukuda CFS criteria <that is, conforming to a more restrictive definition of CFS> was the most powerful predictor of poor response to either GET or CBT in those with fatigue’.
Yes, experienced ME/CFS clinicians hold different views on exercise. 'Lerner “prohibits” exercise (131,132) until CFS patients score 7 on his Energy Index Point Score [meaning a person who does not need to nap during the day, is up from 7AM to 9PM, can work a sedentary 40-hr/ week job, and do light house-keeping] saying “if you exercise before that you're going to go backwards" (133).’ Perhaps that is extreme but that is his particular clinical observation, based no doubt on having seen many thousands of patients.
Bateman’s point that, until the pathology of ME/CFS is better understood, it is wise to apply caution in exercise therapies is well made. First do no harm.
Best regards,
I have now read your booklet ‘It’s not in your head’. The linking of anxiety to adrenalin to orthostatic intolerance is terrific and seems so obvious that it is a wonder all doctors do not understand that. I guess such are many good insights – obvious in retrospect. Research and dissemination of this insight and the link to stretchy tissues too will hopefully in time bring comfort and effective treatment to many more patients.
As I said, I saw your presentation at the ME/CFS conference and have since passed your insights on to other ME/CFS patients together with positive comments about you as a potentially useful,lateral thinking doctor for patients with ME/CFS.
However, in the manner of many who have a shiny new hammer, you weaken your argument by suggesting too many things are only nails. By venturing onto ME/CFS ground with a rigid prescription of exercise, you reveal a lack of knowledge in this particular area. My good opinion of you was the reason why I was a bit gobsmacked in your office when you offered a prescription for rigid GET – an approach that has been discredited as an effective treatment of ME/CFS.
I really appreciate that you responded to my letter. However I think, in your haste to reply you have missed or misunderstood most of the points I was making. I have no problem with Florinef. A prescription for that was one of the reasons we came to see you and we will of course be trying it. I do hope that you will have time to reread my letter and look at some of the references that are linked in it. I think you are a well-intentioned doctor who seeks truth and so I believe that offering some more information is not a waste of time.
There are many points I would like to cover here but I will restrict it to just a few.
1.ME/CFS
ME/CFS is different from just fatigue. It isn’t caused by deconditioning. It isn’t maintained by deconditioning (although may be exacerbated by it). ME/CFS is not fully explained by orthostatic intolerance. There is no evidence that ME/CFS goes away in older patients as their blood pressure increases or is cured by exercise and/or orthostatic intolerance drugs. Yes, stretchy tissues may be a predisposing and exacerbating factor but, as far as I know, not all patients with ME/CFS have stretchy tissues or orthostatic intolerance.
When your booklet speaks of ME/CFS, it is weak. Trying to cover drug treatments for ‘Fatigue’ (a poorly defined symptom of a wide range of medical conditions and behaviours) in only three sentences, helps no one.
2. 'Housework does not count as exercise'
A minor point but there speaks a man who probably hasn’t done much housework. How can you be suggesting 5 minutes of walking is exercise of therapeutic significance and yet ignore the exertion of, for example, vaccuuming the carpets, raking leaves or washing the car? Have a go at stripping a double bed and remaking it in a timely fashion. There are studies that have examined calories burned by various types of housework – have a look. Chat to your wife.
3.Rigidly applied GET is dangerous
Even exercise fanatics like Michelle Bridges acknowledge that, if you have a full-on cold or flu, you don’t train. You give your body a chance to fight the pathogens. The biochemically induced ‘sickness response’ that causes people with infections to seek quietness and reduce activity is an example of evolution endorsing this.
Most proponents of exercise programmes for ME/CFS patients now recognise that flexibility is important. If a patient has PEM or a secondary infection or has had to exert themselves doing some other extra activity that day, then there is no value in sticking to a pre-defined amount of additional exercise. There is potential harm, perhaps lasting harm, just as a person with the flu who pushes through a training session may do themselves harm.
Your statements that ‘Exercise must be regimented’ and that ‘over-exercise is avoided by doing an identical regimen every day’ are dangerous for healthy people, let alone people with ME/CFS, and lack nuance. If you do only one thing as a result of my letters, please do this. Read the article on exercise for ME/CFS patients by Lucinda Bateman, a very well respected expert in this specialist field. http://iacfsme.org/ME-CFS-Primer-Ed...he-Exercise-Conundrum-Lucinda-Bateman,-M.aspx
Exercise in this context is a treatment, with benefits and risks. If you are going to prescribe it for ME/CFS patients and write about it, you need to know more. A recent article by Tom Kindlon (http://www.ahmf.org/Fall2011-Kindlon-Harms-paper-59-111.pdf) on reporting of harms from exercise interventions for ME/CFS patients would be worth reading. Unless data on any harm of exercise therapy for accurately diagnosed ME/CFS patients is systematically recorded, it is not possible to make reliable statements about its safety for this patient group. As you say, your feelings about whether your ME/CFS patients have been helped or harmed by a particular kind of GET are undoubtedly biased. Most patients who find no help in what a doctor offers just move quietly on and ME/CFS patients who must carefully allocate their energy (and funds) probably do this more than most. The finding that 'high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health’ is also biased but deserves consideration alongside your own experience.
Interpreting the data that does exist is indeed complex.
For example ‘ it has been shown that satisfying the Fukuda CFS criteria <that is, conforming to a more restrictive definition of CFS> was the most powerful predictor of poor response to either GET or CBT in those with fatigue’.
Yes, experienced ME/CFS clinicians hold different views on exercise. 'Lerner “prohibits” exercise (131,132) until CFS patients score 7 on his Energy Index Point Score [meaning a person who does not need to nap during the day, is up from 7AM to 9PM, can work a sedentary 40-hr/ week job, and do light house-keeping] saying “if you exercise before that you're going to go backwards" (133).’ Perhaps that is extreme but that is his particular clinical observation, based no doubt on having seen many thousands of patients.
Bateman’s point that, until the pathology of ME/CFS is better understood, it is wise to apply caution in exercise therapies is well made. First do no harm.
Best regards,
