i think this is the take-away for me. Of course the findings don't show that exercise would be helpful. But the findings are helpful in pointing out that this is a common-sense position and the Dutch CBT study's claim of no relationship between fatigue and activity is absurd.
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Correlation of fatigue with disability and accelerometer-measured daily physical activity in patients with relapsing-remitting MS 2023 Luostarin et al
- Thread starter Andy
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i think this is the take-away for me. Of course the findings don't show that exercise would be helpful. But the findings are helpful in pointing out that this is a common-sense position and the Dutch CBT study's claim of no relationship between fatigue and activity is absurd.
Highlights
Abstract
- A significant correlation was found to exist between fatigue and disability.
- Total daily activity correlated with fatigue.
- A lower disability rate, better physical condition, and higher daily-living activity were found to predict lower fatigue levels.
Background
Fatigue is one of the most common symptoms in patients with multiple sclerosis (MS). Furthermore, measuring its effects on patients in daily life is challenging. This study aimed to discover the association between relapsing-remitting MS (RRMS) patients’ disability, fatigue, and accelerometer-measured physical activity.
Methods
A total of 41 patients with RRMS with an Expanded Disability Status Scale (EDSS) level of 0–5.5 and 20 healthy controls completed the Modified Fatigue Impact Scale (MFIS) and the Fatigue Severity Scale (FSS) questionnaires. The EDSS was evaluated for all patients with RRMS, and all participants performed the MS Functional Composite (MSFC) test and six-min walk test and wore an accelerometer for seven days.
Results
Patients with an EDSS level of 0–2.5 were found to have higher fatigue levels (p < 0.001) than healthy controls but lower levels than patients with an EDSS level of 3–5.5 (p < 0.001). A significant correlation was found to exist between fatigue and disability level measured by the EDSS (EDSS/FSS, r=0.750/p=0.001; EDSS/MFIS, r=0.661/p=0.001) and with the MSFC test in the patient group (MSFC/FSS, r = −0.350 p=0.025; MSFC/MFIS, r = −0.423/p=0.007). Total daily activity correlated with fatigue as measured by the FSS (MVPS/FSS r = −0.357/p=0.028, step count/FSS r = −0.463/p=0.003), but no correlation was found between the EDSS or the MSFC.
Conclusion
A lower disability rate, better physical condition, and higher daily-living activity were found to predict lower fatigue levels.
Open access, https://www.msard-journal.com/article/S2211-0348(23)00409-1/fulltext
The typical how to tell a scientist from a thicko question: can you see that what you’ve tested and found is that the less ill people are able to do more or feel less tired. Or are you foolish enough to convince/delude yourself that factual obvious known doesn’t exist snd ‘just maybe faking it until you make it’ works for disabled people.
it’s all how it gets either deliberately used or how stupid people are allowed to delude themselves and not be corrected when they because of this read these sorts of things wrongly.
As a side question I’ve had come up on Fb yesterday a ‘dr’ offering free sessions for those with MS to build themselves up and do exercises to reduce their fatigue.
this shocked me as I thought MS was associated with fatiguability asmuch as 'fatigue' - of course the very many comments were all from enthusiastic people desperate to ‘get help to help themselves’ (but you never know with social media what's/who's behind them)
is this the same con artist like situation happening with MS as ME had/has, or am I missing something where physical therapy does help those with MS getting fatigued?
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From the conclusion of the paper:
"Fatigue plays a significant role in MS and has a strong effect on disability and, for example, the retirement of patients with MS. This study clearly demonstrated a link between fatigue and functional capacity. Disability and fatigue were also clearly associated with patients’ endurance capacity. The amount of daily physical activity by patients was related to their level of fatigue. A lower disability rate, better physical condition, and higher daily activity predicted lower fatigue levels. Thus, a suitable form of exercise should be found for MS patients, considering their functional capacity, to maintain their ability to function as well as possibly reduce their incidence of fatigue. This research is unique because it was extensive and used modern methods. Furthermore, more specific research is required into patients’ disability and actual physical activity levels, taking the existing levels of patients’ disability into account."
If they do - and I’d be worried about the ethics of it if there is risk of harm - I surely hope that at least gif MS (we seem to not matter to anyone) the measures must be proper randomised matched groups being followed up over long long time periods ie every year for 20yrs, with no ‘less than 3yrs’measure being allowed to count as success if the patients actually then did worse than the non-exercise groups longer term.
It’s so awful watching the self-deluded thinking they are doing people s favour because they pushed patients with whatever into pushing themselves to exercise and think ‘they’ve improved’ for 6months only to then close the door and their log books when the sand people realise what they actually did with that was damage their future.
no chronic illness should allow any of these therapies to not have very longitudinal follow ups. And I think particularly where it’s CBT or psych there needs to be non clinical psych independent reporting channels (it can be a independent from nhs and bps and keen to note the harm of gaslighting part of scientific psychology as long as there are NO career path/funding/boss connections/cross-overs) people can articulate harms that they realise happened Uk them as they realise. But given it’s ‘embedded’ as a technique to manipulate into so many non-psych areas now then it needs to be considered a factor and necessary measure for all particularly where subjective is seen as s primary measure is gaslighting patients short term is ‘worth it’ / can ‘win the game’ etc I want to know the huge costs of that ‘game winning’ these people kid themselves are do ‘white lie innocent’ are doing to generations.
and yes absolutely all published journals should be required to publish updates where it is debunked saying that as frankly if they eg say ‘it might help/doesn’t harm’ then the next year the tests begin to make it clear eg at 4yrs well it did seem to cause detriment as the exercise group is significantly worse.
the whole area needs a better way to deal with drop-out rates given these are required gif self-preservation by sensible patients who know something is farming then and so are being used wronjj go ly as a filter to create a filtered to only the fittest group in the treatment condition when in reality the fewer people who complete something the more weight should be given to the independent, raw feedback of those participants. If 29% drop out then there should be a separate paper given same weight alongside it devoted only to their raw, independent voice done by someone utterly unconfoicted with the investigators - in the absence of ‘yellow card’. NORGING in drug trials is more important than checking fir harm so why is it disappeared snd such testimony engineered out and minimised or censored in subjective (where the original methodology so poor and subjective it is even more vital) and particularly certain ‘schools’ of research ?
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Yep they are saying ‘in people who can [edit: still] run a marathon competitively each week there is less MS so why aren’t these MS people just building themselves up to marathon running?’ Level of dumbness … and bigotry.This is simply asinine. It's like having as the universal answer to poverty that poor people should just buy some money. With their lack of money.
Yet again, something that children can easily understand. There's some kind of very weird pattern happening here, where people just straight up refuse to reason over easy stuff.
sure the only difference between those lucky people with nothing wrong with them running marathons and people with severely debilitating MS is the lack of a good sports medicine practitioner motivating them to be the healthy marathon runner..
It borders on clinical level grandiosity doesn’t it?
EDIT: even though many might have been marathon runners that were better than those who didn't go on to have MS or another chronic illness before they got ill - which is typical factual narrative of many of our lives that people like this always have to rewrite or shout over because 1. they aren't personality-types who are keen on reality getting in the way of them thinking what they want to think and 2. believe doing that is acceptable because 'truth is 'up for debate'' (that last phrase sound familiar?)
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