Parkinson's actometers again

[Jonathan Edwards]

https://www.theguardian.com/society...or-parkinsons-patients-hailed-as-lifechanging

Piece in the Guardian about using actometers in Parkinsons.
I am a bit sceptical that they will be so useful in routine practice. The main sell is that they avoid actually going to clinic to see a doctor and there is talk of physio that sounds dubious but as a research tool I still think this would be useful in ME.

 

[Rain]

I am a bit sceptical that they will be so useful in routine practice. The main sell is that they avoid actually going to clinic to see a doctor and there is talk of physio that sounds dubious but as a research tool I still think this would be useful in ME.

Could someone please direct me towards a thread where this have been discussed earlier? Could not find anything via search. Thank you.

 

[rvallee]

“The problem is that Parkinson’s changes from day to day, and even throughout each day.

Well that's awkward given another paper discussed today about somatic symptoms disorder where they explicitly claim that this kind of fluctuation is a clear positive sign of somatization, even when there is an identifiable cause.

Well, it would be awkward if people cared about consistency. The question is: are experts aware of this contradiction, and thus deliberately lie when they claim any such variation to be a clear and unmistakable sign of somatization, or do they just not care?

I know it's similar to MS in that regard, and Lupus. I think it's also fairly known to experts. So are we really going to have two mutually exclusive truths deciding the lives of millions, in full awareness that both cannot be true, with only one of those two "truths" being confirmed? And thus the other a blatant lie?

Another question that needs to be asked is the burden on the patients. Surely they are far too great a burden, otherwise the claims from the PACE authors really sound like another blatant lie.

 

[Jonathan Edwards]

Could someone please direct me towards a thread where this have been discussed earlier? Could not find anything via search. Thank you.

We revisited this fairly recently in the thread If and How to Research Pacing, I think. The original discussion is probably four or five years ago when we were discussing what projects were worthwhile around the time of DecodeME being assessed.

 

[FMMM1]

Could someone please direct me towards a thread where this have been discussed earlier? Could not find anything via search. Thank you.

Extensive discussion re using actimetry here*. Also, bear in mind Jonathan Edwards's comment "When I acted as MRC advisor this recent time around the GWAS [Chris Ponting's] project was the one thing that looked worthwhile, apart from maybe some actimetry studies**.


*https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/
**https://www.s4me.info/threads/georg...e-bps-and-long-covid.20126/page-4#post-319043