me/cfs 27931
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Me too. I'd really like to show this to a certain neurologist.
Distinguishing CFS - New Zealand Research
- Thread starter Old Bones
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Send it to everyone who does these tests on PwME or thinking about doing it. How many times do they need to repeat this test? Where's the follow up?
Hutan
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I emailed Dr Hodges yesterday (email address easily found on Massey University website) and she replied very promptly with the screening questionnaire and the participant consent form for the next study.
I've completed the questionnaire and this morning I sent an email to Dr Hodges about a few issues. She rang me to discuss the issues I raised. I didn't ask if I could share what she said but as my comments are pretty positive, I don't think she will mind.
She became interested in CFS when a colleague asked if she would give his wife and children (with CFS) an exercise test. The tests were all perfectly normal. But she started reading the CFS literature and became interested.
She explained a bit about the first study. It was pretty small - the CFS component was only 10 participants plus matched controls. And it sounds as though the results were variable. Some people with CFS actually performed poorly on the first test as well as the second. Dr Hodges mentioned that they seemed to be finding two groups of people in the CFS/ME cohort. Some got over the exercise in a couple of days but others took four weeks. Some of the people travelled quite a long way to do the study and so might have been exhausted before that first test. Dr Hodges said that they are now travelling to some of these people to test them in their home town and see if the results are replicable. So, this first study may not have very robust findings but it has obviously raised enough questions to allow this next larger study to proceed.
The patient consent form had a definition of CFS/ME as 'a complicated disease characterised by extreme fatigue that cannot be explained by an underlying medical condition'. I mentioned in my email that no one knows if it is actually complicated, it might just be currently poorly understood, and that the word 'complicated' tends to be used by the BPS crowd to indicate that our thoughts and behaviours are involved in maintaining the illness. I also said that extreme fatigue wasn't really the main characterising feature, rather PEM is. And I queried the statement that our fatigue can't be explained by a medical condition, which is probably nit-picking, but some readers could assume from that definition that our fatigue must therefore explained by a 'non-medical condition'.
Dr Hodges said that she hadn't had a definition to start with but her ethics committee had required one. I got the impression that she didn't necessarily place much importance on the definition and didn't think we should either.
I questioned the statement 'The fatigue may worsen with physical or mental activity but it doesn't improve with rest'. It isn't a big step from saying that rest doesn't help, to saying that pushing through the fatigue is the right way to go. Of course rest (as opposed to more activity) does help with the return to a baseline during PEM.
The participant consent form says that knowledge of how people with CFS/ME respond to exercise will 'be valuable in creating solutions for exercise prescription in the future'. And it is 'anticipated that there will be an intervention study aimed at investigating the effect of vibration training on biomarkers of fatigue'. So that sounded like there was an underlying belief in exercise potentially being a cure for CFS/ME. I questioned that in the email but we didn't properly cover it in the phone conversation. I understand that an exercise physiologist has certain tools and probably comes with a mindset that exercise helps with a lot of things.
Dr Hodges did state that she knows that there were problems with the PACE trial and that there are problems with studies into the effect of exercise and the effectiveness of exercise therapy in this illness in general. This is when she mentioned the complicating issues that they had come across in her initial trial.
I also asked about a question in the survey about what we attribute our illness to (100% physical cause; 100% psychological cause and various combination in between). Dr Hodges replied that that question was just part of a survey characterising the illness that was taken from Leonard Jason's work. She said that they were thinking of shortening the survey and that she didn't think that answers to that question would be used anywhere. She has a PhD student working for her so she may not be totally hands on with every part of the work.
She is interested in lactic acid levels and in heart rate variability in people with ME. I get the sense that she can see a lot of interesting questions to be answered.
Dr Hodges seems very keen to find participants and to do the studies on this illness properly. She and I might disagree on some underlying beliefs such as the value of exercise in curing ME or CFS/ME. But my sense is that she is curious and compassionate and willing to engage productively with people with the illness. She is reading the literature and criticisms of past work and I think she will be open to whatever conclusion the data points to.
And so, if my family gets through the screening process, we will try to participate in this next study. Dr Hodges, if you read this, you and/or your PhD student are very welcome to come onto Phoenix Rising anytime to discuss things, get a sense of whether what you are finding is common in a broader population and/or let us know how things are going and when papers or articles are published.
I've completed the questionnaire and this morning I sent an email to Dr Hodges about a few issues. She rang me to discuss the issues I raised. I didn't ask if I could share what she said but as my comments are pretty positive, I don't think she will mind.
She became interested in CFS when a colleague asked if she would give his wife and children (with CFS) an exercise test. The tests were all perfectly normal. But she started reading the CFS literature and became interested.
She explained a bit about the first study. It was pretty small - the CFS component was only 10 participants plus matched controls. And it sounds as though the results were variable. Some people with CFS actually performed poorly on the first test as well as the second. Dr Hodges mentioned that they seemed to be finding two groups of people in the CFS/ME cohort. Some got over the exercise in a couple of days but others took four weeks. Some of the people travelled quite a long way to do the study and so might have been exhausted before that first test. Dr Hodges said that they are now travelling to some of these people to test them in their home town and see if the results are replicable. So, this first study may not have very robust findings but it has obviously raised enough questions to allow this next larger study to proceed.
The patient consent form had a definition of CFS/ME as 'a complicated disease characterised by extreme fatigue that cannot be explained by an underlying medical condition'. I mentioned in my email that no one knows if it is actually complicated, it might just be currently poorly understood, and that the word 'complicated' tends to be used by the BPS crowd to indicate that our thoughts and behaviours are involved in maintaining the illness. I also said that extreme fatigue wasn't really the main characterising feature, rather PEM is. And I queried the statement that our fatigue can't be explained by a medical condition, which is probably nit-picking, but some readers could assume from that definition that our fatigue must therefore explained by a 'non-medical condition'.
Dr Hodges said that she hadn't had a definition to start with but her ethics committee had required one. I got the impression that she didn't necessarily place much importance on the definition and didn't think we should either.
I questioned the statement 'The fatigue may worsen with physical or mental activity but it doesn't improve with rest'. It isn't a big step from saying that rest doesn't help, to saying that pushing through the fatigue is the right way to go. Of course rest (as opposed to more activity) does help with the return to a baseline during PEM.
The participant consent form says that knowledge of how people with CFS/ME respond to exercise will 'be valuable in creating solutions for exercise prescription in the future'. And it is 'anticipated that there will be an intervention study aimed at investigating the effect of vibration training on biomarkers of fatigue'. So that sounded like there was an underlying belief in exercise potentially being a cure for CFS/ME. I questioned that in the email but we didn't properly cover it in the phone conversation. I understand that an exercise physiologist has certain tools and probably comes with a mindset that exercise helps with a lot of things.
Dr Hodges did state that she knows that there were problems with the PACE trial and that there are problems with studies into the effect of exercise and the effectiveness of exercise therapy in this illness in general. This is when she mentioned the complicating issues that they had come across in her initial trial.
I also asked about a question in the survey about what we attribute our illness to (100% physical cause; 100% psychological cause and various combination in between). Dr Hodges replied that that question was just part of a survey characterising the illness that was taken from Leonard Jason's work. She said that they were thinking of shortening the survey and that she didn't think that answers to that question would be used anywhere. She has a PhD student working for her so she may not be totally hands on with every part of the work.
She is interested in lactic acid levels and in heart rate variability in people with ME. I get the sense that she can see a lot of interesting questions to be answered.
Dr Hodges seems very keen to find participants and to do the studies on this illness properly. She and I might disagree on some underlying beliefs such as the value of exercise in curing ME or CFS/ME. But my sense is that she is curious and compassionate and willing to engage productively with people with the illness. She is reading the literature and criticisms of past work and I think she will be open to whatever conclusion the data points to.
And so, if my family gets through the screening process, we will try to participate in this next study. Dr Hodges, if you read this, you and/or your PhD student are very welcome to come onto Phoenix Rising anytime to discuss things, get a sense of whether what you are finding is common in a broader population and/or let us know how things are going and when papers or articles are published.
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@Hutan - Great write up. Thank you for sharing. It is a travesty that so much prior research was based on preconceived notions about this disease, and those studies continue to inform current research. I find the current diagnostic criteria a vague basic understanding of this disease...the really interesting parts have not been explored (sleep abnormalities, why mental fatigue can cause PEM, variable emotional states with PEM). Dr. Hodges sounds open-minded and interested. It is equally good to know that the NIH's current study is also being flexible, as they are learning as they go.
daisybell
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I've also completed the questionnaire, and emailed Dr Hodges!
I should find out by the end of this week if I can participate...
I too was concerned to read about the possibility of vibration training being tested.
I certainly wouldn't be putting myself forward for that. Vibration, e.g. in a car or train is one of the things that makes me feel unwell very quickly.
Anyhow, I'm hoping to have a chance to share some of the most relevant recent literature if I get picked!
I should find out by the end of this week if I can participate...
I too was concerned to read about the possibility of vibration training being tested.
I certainly wouldn't be putting myself forward for that. Vibration, e.g. in a car or train is one of the things that makes me feel unwell very quickly.
Anyhow, I'm hoping to have a chance to share some of the most relevant recent literature if I get picked!
Snow Leopard
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@Hutan
Sounds like they have a lack of experience/knowledge of ME & CFS, something that could have been rectified simply by having a knowledgeable patient on the study proposal team. (something that should be mandatory, in my opinion).
Sounds like they have a lack of experience/knowledge of ME & CFS, something that could have been rectified simply by having a knowledgeable patient on the study proposal team. (something that should be mandatory, in my opinion).
alex3619
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I just moved to a new medical clinic for my care, and it has an exercise physiologist on staff. I hope to talk to them at some point. I would love CPET to be available here in Australia.Send it to everyone who does these tests on PwME or thinking about doing it. How many times do they need to repeat this test? Where's the follow up?
daisybell
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I've just heard that I meet the criteria to participate!
Snow Leopard
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daisybell
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Worth it to have some objective evidence to show the disbelievers I think.
Also - I'm quite keen to challenge their ideas about exercise prescription.
Why is it that everyone wants us to exercise more?
It would be nice to feel I could make a difference/be useful!
@daisybell and anyone else who is going to participate. You are a lot braver than me.
Hutan
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I heard last week that I have been accepted too.
You might remember I had a problem with their definition of CFS in the participant information sheet.
The patient information sheet sent out with the acceptance email now gives the definition as
Little things and I don't know if feedback from patients influenced the change, but I'm left with a good feeling that these researchers do listen.
You might remember I had a problem with their definition of CFS in the participant information sheet.
The patient information sheet sent out with the acceptance email now gives the definition as
Gone is the 'complicated', there's a recognition that CFS is more than fatigue and now the symptoms can not currently be explained by a medical condition.
Little things and I don't know if feedback from patients influenced the change, but I'm left with a good feeling that these researchers do listen.
RogerBlack
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I don't like the phrasing.
The condition is CFS. See, for example, >60% of people having major improvement with rituximab on the placebo controlled trial. That is a very powerful indication that it's one condition (at least in a significant subset of patients), which can be selected by diagnostic criteria.
There may be limited practical clinical tests for it, and no real nailed-down mechanism, but this does not make it not a medical condition, any more than AIDS/GRID wasn't a medical condition before the discovery of HIV.
'underlying medical condition other than CFS' - OK.
Snowdrop
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The original link to the press release has broken. The new link is: http://www.massey.ac.nz/massey/abou...cle_uuid=8D4B673B-BF30-718A-4363-5BE878DD08C3
Dechi
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I didn't have the courage to read every comment, but based on what I know about the 2 day CPET test (that I haven't done yet), there is a piece of the puzzle missing in the way they convey the results. No attention whatsoever is given to recovery time. Recovery time would prove even more strongly how ill ME people are compared to normal subjects.
I think there should be a follow-up after 24 hours, 72 hours, 1 week, 2 weeks, 1 month. That part is the hardest to prove, and is why people don't believe us. Nobody can fully comprehend the fact that it takes 4 weeks or even 2 months to recover from 10-20 minutes of physical activity. Unless they live it.
So to me, it's a hige missed opportunity. I hope this new study takes it into account.
I think there should be a follow-up after 24 hours, 72 hours, 1 week, 2 weeks, 1 month. That part is the hardest to prove, and is why people don't believe us. Nobody can fully comprehend the fact that it takes 4 weeks or even 2 months to recover from 10-20 minutes of physical activity. Unless they live it.
So to me, it's a hige missed opportunity. I hope this new study takes it into account.
daisybell
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I've just done the first session of testing - and go back for day 2 in a couple of days.
It was interesting to see that my heart rate remained slightly elevated for a long time after I finished the exercising... it was still going about 10bpm faster when I removed the monitor. Prof Hodges says they see that with all the pwme.
I feel tired all over but I haven't crashed yet.....
It was interesting to see that my heart rate remained slightly elevated for a long time after I finished the exercising... it was still going about 10bpm faster when I removed the monitor. Prof Hodges says they see that with all the pwme.
I feel tired all over but I haven't crashed yet.....
Hutan
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Hey @daisybell, good to hear you are underway.
I finished mine two weeks ago. I guess the objective exercise and circulation system metrics are what the researchers will focus on, so maybe it's ok to say how I went? If you don't want to read it, stop now.
XXXXXXX
I was quite busy in the days before the first session, preparing to leave my family and travelling. I felt ok after the test, I mean a little bit dizzy and sick but that passed quickly. I was actually surprised what relatively little effort the researchers were asking for - they just seemed to take things a little beyond where the anaerobic threshold was reached? And it's just a couple of minutes of work. Because I was away from home with nothing else to do, I was able to rest a lot between sessions.
The night of the first session, I had chills, couldn't get warm, hurt all over quite badly and couldn't sleep for quite awhile. It wasn't muscle aches from the cycling, it was the flu-type pain and my feet burned.
The next day, I woke up feeling ok and had a stroll into the city, had lunch and walked back to where I was staying. The walk home got harder and harder, my legs became heavier and heavier. I then rested in bed for the rest of the day.
So, a bit less than 48 hours after the first session, I did the second CPET. My anaerobic threshold dropped from previously 156 to 137 bpm from memory. The evening was ok.
The next day I travelled home, and it was pretty much ok.
The next few days were ok-ish. I was quite busy, catching up on housework, getting ready for visitors and then hosting them. I thought that the CPET had not had much of an effect. I wondered if maybe I didn't really have PEM, or ME.
However, after the visitors left, I've pretty much fallen in a heap. My days are much harder to get through. My heart rate is high in the evenings (120 bpm resting on the sofa for goodness sake) and I'm getting a lot of sore throats, glands up, headaches, neurological odd things, my ear drum burst, mouth ulcers and I'm periodically getting bad all-over pain and chills. I normally wake up at 6.30 am but I'm waking up around 8 am and have to really fight to get out of bed and do what I have to do. I'm collapsing on the sofa and then bed for the day much earlier than usual. My activity levels have dropped right down to a bare minimum.
I doubt that the CPET itself is the major reason for this. I think, for me, it's more of a cumulative thing - more the impact of total activity over a period of time. I think studies of this kind would be better if we wore fit bits for two weeks before and for some time after.
The researchers were lovely and committed to understanding the disease better. Hopefully the drop in anaerobic threshold means something. They didn't do the blood testing, which was a shame as I really want to see something solid that explains why I'm sick.
Having experienced this, it brings home to me the very many factors that confound any study, even ones with objective outcomes.
These factors include:
*other activity (e.g. I think standing for 15 minutes in the cold waiting to be picked up (not the researchers' fault) had a big impact on my blood pressure and ability to think in the first session; also activity before, between and after the sessions)
* menstrual cycle
* medication (I had had quite a lot of nurofen in the days prior to the first session for neuralgia and a migraine)
* difficulty in remembering and rating subjective impacts. Unless there is some sort of a real time method for gathering impressions, I think subjective ratings aren't worth much at all.
* technical issues (e.g. I was slow getting the mouthpiece in with the bag of oxygen for one test).
I finished mine two weeks ago. I guess the objective exercise and circulation system metrics are what the researchers will focus on, so maybe it's ok to say how I went? If you don't want to read it, stop now.
XXXXXXX
I was quite busy in the days before the first session, preparing to leave my family and travelling. I felt ok after the test, I mean a little bit dizzy and sick but that passed quickly. I was actually surprised what relatively little effort the researchers were asking for - they just seemed to take things a little beyond where the anaerobic threshold was reached? And it's just a couple of minutes of work. Because I was away from home with nothing else to do, I was able to rest a lot between sessions.
The night of the first session, I had chills, couldn't get warm, hurt all over quite badly and couldn't sleep for quite awhile. It wasn't muscle aches from the cycling, it was the flu-type pain and my feet burned.
The next day, I woke up feeling ok and had a stroll into the city, had lunch and walked back to where I was staying. The walk home got harder and harder, my legs became heavier and heavier. I then rested in bed for the rest of the day.
So, a bit less than 48 hours after the first session, I did the second CPET. My anaerobic threshold dropped from previously 156 to 137 bpm from memory. The evening was ok.
The next day I travelled home, and it was pretty much ok.
The next few days were ok-ish. I was quite busy, catching up on housework, getting ready for visitors and then hosting them. I thought that the CPET had not had much of an effect. I wondered if maybe I didn't really have PEM, or ME.
However, after the visitors left, I've pretty much fallen in a heap. My days are much harder to get through. My heart rate is high in the evenings (120 bpm resting on the sofa for goodness sake) and I'm getting a lot of sore throats, glands up, headaches, neurological odd things, my ear drum burst, mouth ulcers and I'm periodically getting bad all-over pain and chills. I normally wake up at 6.30 am but I'm waking up around 8 am and have to really fight to get out of bed and do what I have to do. I'm collapsing on the sofa and then bed for the day much earlier than usual. My activity levels have dropped right down to a bare minimum.
I doubt that the CPET itself is the major reason for this. I think, for me, it's more of a cumulative thing - more the impact of total activity over a period of time. I think studies of this kind would be better if we wore fit bits for two weeks before and for some time after.
The researchers were lovely and committed to understanding the disease better. Hopefully the drop in anaerobic threshold means something. They didn't do the blood testing, which was a shame as I really want to see something solid that explains why I'm sick.
Having experienced this, it brings home to me the very many factors that confound any study, even ones with objective outcomes.
These factors include:
*other activity (e.g. I think standing for 15 minutes in the cold waiting to be picked up (not the researchers' fault) had a big impact on my blood pressure and ability to think in the first session; also activity before, between and after the sessions)
* menstrual cycle
* medication (I had had quite a lot of nurofen in the days prior to the first session for neuralgia and a migraine)
* difficulty in remembering and rating subjective impacts. Unless there is some sort of a real time method for gathering impressions, I think subjective ratings aren't worth much at all.
* technical issues (e.g. I was slow getting the mouthpiece in with the bag of oxygen for one test).
daisybell
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Hey thanks for that @Hutan - it's interesting to hear how you found it.
I'm definitely more tired now - about 30 hours after the first test and I can feel the exhaustion. I am on the 72 hr protocol so I'm hoping that I don't recover too quickly!!!!
I am disappointed that we aren't wearing the heart rate monitors for longer - I guess that's the drawback of a small study with limited funding, but it would be really interesting to look at heart rates for a few days prior to testing, and then for the week after the first CPET I think.
Prof Hodges told me that quite a few people have had seriously elevated heart rates on the second day of testing - I occasionally get periods of tachycardia when I'm really tired - it would be good if those are captured.
I didn't get blood taken either - and like you, I'm disappointed. It was to go down to Prof Tate for cytokines analysis...
I offered to go into my GP and get a blood form but they didn't want me to.
My arterial stiffness etc were all normal - I'm in rude health except for the ME! Comes from years of trying to take care of my health - which obviously did absolutely nothing to prevent my immune system from going haywire.
I actually didn't find the exercise bike too bad, except for right at the end. And then I felt ok fairly quickly after. But then all my muscles feel more tired now, not just the ones I exercised so I'm not even sitting doing my tapestry because my hands are too tired to grip the needle properly.
I have been doing my usual daily routine (which takes most of the day, once I've rested in between) so that won't be a confounding factor for me. At this time of year, that involves quite a lot of feeding animals so I won't get much rest in between their sessions! Am hoping I don't collapse in a complete heap after it's all over......
My husband wanted to know how I will feel if the second test isn't worse than the first.... I said I'd be going back to the doctor for a different diagnosis- but realistically I am so certain that I will be worse that I haven't worried about it! I'm really hoping for some objective evidence to silence the disbelieving....
Xx
I'm definitely more tired now - about 30 hours after the first test and I can feel the exhaustion. I am on the 72 hr protocol so I'm hoping that I don't recover too quickly!!!!
I am disappointed that we aren't wearing the heart rate monitors for longer - I guess that's the drawback of a small study with limited funding, but it would be really interesting to look at heart rates for a few days prior to testing, and then for the week after the first CPET I think.
Prof Hodges told me that quite a few people have had seriously elevated heart rates on the second day of testing - I occasionally get periods of tachycardia when I'm really tired - it would be good if those are captured.
I didn't get blood taken either - and like you, I'm disappointed. It was to go down to Prof Tate for cytokines analysis...
I offered to go into my GP and get a blood form but they didn't want me to.
My arterial stiffness etc were all normal - I'm in rude health except for the ME! Comes from years of trying to take care of my health - which obviously did absolutely nothing to prevent my immune system from going haywire.
I actually didn't find the exercise bike too bad, except for right at the end. And then I felt ok fairly quickly after. But then all my muscles feel more tired now, not just the ones I exercised so I'm not even sitting doing my tapestry because my hands are too tired to grip the needle properly.
I have been doing my usual daily routine (which takes most of the day, once I've rested in between) so that won't be a confounding factor for me. At this time of year, that involves quite a lot of feeding animals so I won't get much rest in between their sessions! Am hoping I don't collapse in a complete heap after it's all over......
My husband wanted to know how I will feel if the second test isn't worse than the first.... I said I'd be going back to the doctor for a different diagnosis- but realistically I am so certain that I will be worse that I haven't worried about it! I'm really hoping for some objective evidence to silence the disbelieving....
Xx
Snow Leopard
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The idea of a maximal exertion test is to exercise maximally - you will know when you've reached the max as you will have to stop, because you feel like you're about to pass out (severe dizziness etc). I was on the bike for almost 18-19 minutes and I wouldn't have described it as "relatively little effort at all"...
The exercise physiologist told me (at the time) that some of the differences between the studies could be due to the level of motivation to keep going - eg the person conducting the test is supposed to tell you to keep going unless it's really obvious you've plateaued. I found it very very hard to keep going past 90% of my MHR.
So some of the previous tests (one day tests also), particularly the ones in the UK, in the 90s might not have really reached true maximal exertion.
It's interesting that they're spacing out the 2 day test over more than 2 days, I guess to see how long the effect lasts. That drop in ventilatory threshold, from 156 to 137 is typical for people with ME or CFS, but not healthy people.
Recovery time is 2-4 weeks.
Re- medication, I had to take asprin before the second test as my headache was so bad...
The exercise physiologist told me (at the time) that some of the differences between the studies could be due to the level of motivation to keep going - eg the person conducting the test is supposed to tell you to keep going unless it's really obvious you've plateaued. I found it very very hard to keep going past 90% of my MHR.
So some of the previous tests (one day tests also), particularly the ones in the UK, in the 90s might not have really reached true maximal exertion.
It's interesting that they're spacing out the 2 day test over more than 2 days, I guess to see how long the effect lasts. That drop in ventilatory threshold, from 156 to 137 is typical for people with ME or CFS, but not healthy people.
Recovery time is 2-4 weeks.
Re- medication, I had to take asprin before the second test as my headache was so bad...
Hutan
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Yes, so in this test, they didn't push things anywhere near that far. I was surprised. I think they just went as far as the ventilatory threshold and a little bit more. I think this was enough to give them what they were after.
They have one cohort retesting after 48 hours and one after 72 hours.