Discussion in 'BioMedical ME/CFS Research' started by Andy, Jun 23, 2018.
Paywalled at https://link.springer.com/article/10.1007/s00421-018-3913-0
5 weeks seems far too short a time scale to assess whether this is a temporary improvement that will be followed by a crash, or a real improvement.
Surely this should ring alarm bells:
My resting and active heart rate increases coincide with worse symptoms, not better.
Sci-hub link here.
Didn't read it yet, but this is what it says about recruiting of participants:
'We recruited patients who had a diagnosis of CFS/ME from their medical practitioner,
according to the updated International Consensus Criteria (Carruthers et al. 2011)
or the 1994 Centres for Disease Control criteria (Fukuda et al. 1994).'
I struggle with taking a shower... in no way I could have attended 20 min. of aquatic exercises...
I am glad my heart calmed down with improvement
It seems clear to me that there are far too many people in the field of sports science. How else to explain all these various groups doing experiments in ME. Don't people who do sports or need rehabilitation need their expert research capabilities?
I'd like to know what flea in their ear encouraged them to say; hey let's do an uncontrolled non-randomised small sample trial using people who have ME? And then only look at other similar trials for confirmation that it's a smashing idea.
But you know what? There's been so much good news coming out that while it's good to know what is still going on elsewhere just maybe my eyeballs will get a rest from all the rolling they do on seeing this nonsense. Can one get PEM from too much eyeball exercise? Now there's a study.
Given that we don't yet really know what has gone wrong to cause the disease process even small benefits may not be helpful long term to overall health. We just can't know yet. And I expect there are always a number of mild pwme that can and do manage to sustain some level of self paced exercise. But again until more is known the person best suited for knowing how much to do is the pwme learning from their own experience and even having support through groups of others who know.
Something interesting I just remember, before I got sick sick ( so I was gradual onset and before I knew I had Cfs) I remember going to gym and I could not raise my HR over 120, I remember the target for me was 145bpm and I would run and try to achieve fat burning zone and was not able to.
I exercised 3-4 times a week (mostly in a pool supplemented with the odd bit of cycling) for most of the 4 years I was mildly affected. I would vary which strokes I would do (including life-saving strokes) and which limbs I would use depending on which muscles seemed to be giving me trouble. Anyway, though doing exercise in water is supposed to be gentle on muscles, it definitely had the potential to cause problems for my muscles. This was particularly evident when I had a relapse when a few gentle lengths with breaks could appear to cause mildly strained muscles.
This was when I was in my late teens and early 20s.
Does this mean some participants might not have been diagnosed with ME/CFS? If so, what are the implications?
I'm trying understand the inclusion criteria. Are they saying that if you have had glandular fever (infectious mononucleosis) in the past then that qualifies for entry, stand-alone? It clearly cannot mean if someone currently had it. But given the 'or' then it looks like someone was eligible if they did not have an ME/CFS diagnosis but did have a GF diagnosis at some point. They also state that ...
I have never had or been diagnosed with ME/CFS, but did contract GF in my late teens. Later in life I had some fatigue-related and spaced-out-feeling issues which I put down as possible GF related, but never ME.
I had by then a very sedentary job and lifestyle, then changed to cycle commuting a fair distance each day, around 12 miles. I was distinctly unfit beforehand, and improved significantly quite quickly. But that would be very unrepresentative of PwME. But could be very representative of people who had previously had GF but not ME.
So the inclusion criteria is important. Did it only include people with a ME/CFS diagnosis? Am I missing something here? If so then what?
They all had a 'CFS/ME' diagnosis 'from their medical practioner' as I quoted above, in post #3. Still, as it says on page 4 of the pdf:
'Of the eleven participants, seven also had COPD or respiratory problems,
six had diagnosed FMS,
four reported recurring neurological symptoms (vertigo, migraines),
three had thermal instability,
and one had POTS.'
Wouldn't be too surprised if they were dealing with chronic fatigue, but not with ME...
There is something very wrong with this picture.
Just a thought and from a 'chance to educate' perspective:
How would you folks feel about inviting the lead author, Suzanne Broadbent, to this thread to discuss her research methodology and criteria?
There are plenty who have already tried to educate her. This is not her first trial with cfs.
No, completely different group.
thanks must have been foggy when I posted that I will delete my post
This is similar to another Broadbent paper:
This contrasts with the protocol in the PACE Trial where what participants are asked to do is determined by “their planned physical activity, and not their symptoms” (p.20); similarly, “a central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback” (p.51) and “if the participant reports an increase in fatigue as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra week or more” (p.66). Bavinton J, Darbishire L, White PD - on behalf of the PACE trial management group. Graded Exercise Therapy for CFS/ME (Therapist manual)
The PACE Trial approach is about breaking the link between symptoms and how much activity is done. It is philosophically quite different.
Even if the results are taken at face value, with a improvement, it doesn't mean that people can keep improving.
Not everyone will be at their ceiling of activity: some people may be able to do a little more.
Though the clinical relevance of this is unclear: some people may become a lot worse in which case, the gamble for potentially only small improvements may not be worth it.
It would have been interesting if the participants had worn actometers to see whether they reduced other activities in their lives.
Absolutely. Whereas pacing is about tuning into symptoms, and anticipating them, to guide activity.
I may be dim but I thought that increased fitness was associated with a reduced heart rate. An increase in heart rate after training sounds positively pathological.
Separate names with a comma.