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Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.
- Thread starter Andy
- Start date
We haven't seen much of this in the replies coming thro so far.
A few offensive comments about PwMe have been put in the "out of scope" section...
MSEsperanza
Senior Member (Voting Rights)
Just have submitted a suggestion.
Was too brain fogged to asses if it made sense.
A suggestion to differentiate and precisely specify diverse forms of fatigue, based on detailed symptoms monitoring (*)
Fatigue is seen as one of the most characteristic symptoms of ME/CFS. While the focus on fatigue has been criticized, to me it still seems justified to list diverse forms of fatigue and fatigability among the core symptoms of ME/CFS. Yet I think fatigue as a symptom, or complex of symptoms, should always be specified.
It seems to me that most clinicians and researchers conceive fatigue as basically being one feature, consisting of two subtypes: an adequately perceived fatigue and an inadequately perceived fatigue. (Perhaps similar to the conception of pain .)
The first subtype is acknowledged to have an underlying pathophysiology whereas the second subtype is seen as a mere distortion of normal bodily and cognitive functions.
At the same time, most researchers I think admit that their ideas how the physiology of 'fatigue' in chronic illness works are still only hypotheses. Fatigue still mostly seems "medically unexplained".
Yet there were some attempts to specify and differentiate manifestations of MS related fatigue which I think could make sense, because they aren't based on premature ideas about the etiology, but on precise observations, and objective measurement derived from those observations. [1,2,4]
I'm afraid though that those attempts to differentiate also apply the underlying concept of adequate and inadequate perceptions. Which maybe doesn't matter so much for the specific features they study if they are seen as 'adequately perceived' fatigue -- as it more often seems to be the case with motor fatigability and cognitive fatigability in MS and other neurological illness.
However, these approaches seem to me to imply that similar symptoms in the same illness or in a comorbidity (or in another illness that is framed as 'medically unexplained' per se) are not worthy to be differentiated and assessed in a similarly elaborated manner, if they are seen only as a a distortion. They then are being denied the possibility of objectively measurable 'real' alterations or of any other relevant objective measures.
Moreover, even the suggestions to differentiate made e.g. by Kluger er al [3] apparently aim at establishing a comparable, unified category of 'fatigue' as a summarization of all forms of fatigue and fatigability.
I think it would be extremely helpful to work on a critique on the concept(s) of fatigue in chronic illnesses, validating the idea of differentiating and speaking of fatigue only with a specifier. Also perhaps, validating the importance of both improving the quality of subjective reports and applying objective measures of specific symptoms associated with 'fatigue'.
In ME/CFS however, specifying diverse forms of fatigue (also in more complex symptoms like PEM which consists of diverse symptoms, including symptoms that cannot be sufficiently described even with differentiated, specified terms of fatigue) I think need to be preceded by more precise observations.[5]
Observations could include cognitive activity and physical activity patterns over a period of time (several weeks at least), accompanied by observation of movement patterns [6] (including fine motor skills) and repeated testing of diverse dimensions of cognitive performance, all compared with both healthy controls and other illness, e.g, depression.
These diverse observations and measurements I think have to be seen together to not only develop useful tools for a more robust diagnosis but also to get better clues where to look for potential pathophysiological factors.
References:
[1] Sehle, A., Vieten, M., Sailer, S. et al (2014), Objective assessment of motor fatigue in multiple sclerosis: the Fatigue index Kliniken Schmieder, J Neurol 261: 1752. https://doi.org/10.1007/s00415-014-7415-7,
[2] Dettmers, C. , Riegger, M. , Müller, O. and Vieten, M. (2016), Fatigability Assessment Using the Fatigue Index Kliniken Schmieder (FKS) Is Not Compromised by Depression. Health , 8, 1485-1494. doi: 10.4236/health.2016.814147.
[3] Kluger BM, Krupp LB, Enoka RM (2013), Fatigue and fatigability in neurologic illnesses: proposal for a unified taxonomy. Neurology. , 80 (4): 409-16, https://n.neurology.org/content/80/4/409 ; PMC article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589241/
Related discussions on S4ME:
[4] Objective assessment of diverse types of MS related fatigue and fatiguability, https://www.s4me.info/threads/objec...of-ms-related-fatigue-and-fatiguability.4241/
[5] Measuring fatigue. Discussion of alternatives to questionnaires: https://www.s4me.info/threads/measuring-fatigue-discussion-of-alternatives-to-questionnaires.7325/
[6] suggestion on how to use accelerometers: https://www.s4me.info/threads/measu...ernatives-to-questionnaires.7325/#post-130804
(*) This is an amended version of a comment made in reference[3] [4]
Was too brain fogged to asses if it made sense.
A suggestion to differentiate and precisely specify diverse forms of fatigue, based on detailed symptoms monitoring (*)
Fatigue is seen as one of the most characteristic symptoms of ME/CFS. While the focus on fatigue has been criticized, to me it still seems justified to list diverse forms of fatigue and fatigability among the core symptoms of ME/CFS. Yet I think fatigue as a symptom, or complex of symptoms, should always be specified.
It seems to me that most clinicians and researchers conceive fatigue as basically being one feature, consisting of two subtypes: an adequately perceived fatigue and an inadequately perceived fatigue. (Perhaps similar to the conception of pain .)
The first subtype is acknowledged to have an underlying pathophysiology whereas the second subtype is seen as a mere distortion of normal bodily and cognitive functions.
At the same time, most researchers I think admit that their ideas how the physiology of 'fatigue' in chronic illness works are still only hypotheses. Fatigue still mostly seems "medically unexplained".
Yet there were some attempts to specify and differentiate manifestations of MS related fatigue which I think could make sense, because they aren't based on premature ideas about the etiology, but on precise observations, and objective measurement derived from those observations. [1,2,4]
I'm afraid though that those attempts to differentiate also apply the underlying concept of adequate and inadequate perceptions. Which maybe doesn't matter so much for the specific features they study if they are seen as 'adequately perceived' fatigue -- as it more often seems to be the case with motor fatigability and cognitive fatigability in MS and other neurological illness.
However, these approaches seem to me to imply that similar symptoms in the same illness or in a comorbidity (or in another illness that is framed as 'medically unexplained' per se) are not worthy to be differentiated and assessed in a similarly elaborated manner, if they are seen only as a a distortion. They then are being denied the possibility of objectively measurable 'real' alterations or of any other relevant objective measures.
Moreover, even the suggestions to differentiate made e.g. by Kluger er al [3] apparently aim at establishing a comparable, unified category of 'fatigue' as a summarization of all forms of fatigue and fatigability.
I think it would be extremely helpful to work on a critique on the concept(s) of fatigue in chronic illnesses, validating the idea of differentiating and speaking of fatigue only with a specifier. Also perhaps, validating the importance of both improving the quality of subjective reports and applying objective measures of specific symptoms associated with 'fatigue'.
In ME/CFS however, specifying diverse forms of fatigue (also in more complex symptoms like PEM which consists of diverse symptoms, including symptoms that cannot be sufficiently described even with differentiated, specified terms of fatigue) I think need to be preceded by more precise observations.[5]
Observations could include cognitive activity and physical activity patterns over a period of time (several weeks at least), accompanied by observation of movement patterns [6] (including fine motor skills) and repeated testing of diverse dimensions of cognitive performance, all compared with both healthy controls and other illness, e.g, depression.
These diverse observations and measurements I think have to be seen together to not only develop useful tools for a more robust diagnosis but also to get better clues where to look for potential pathophysiological factors.
References:
[1] Sehle, A., Vieten, M., Sailer, S. et al (2014), Objective assessment of motor fatigue in multiple sclerosis: the Fatigue index Kliniken Schmieder, J Neurol 261: 1752. https://doi.org/10.1007/s00415-014-7415-7,
[2] Dettmers, C. , Riegger, M. , Müller, O. and Vieten, M. (2016), Fatigability Assessment Using the Fatigue Index Kliniken Schmieder (FKS) Is Not Compromised by Depression. Health , 8, 1485-1494. doi: 10.4236/health.2016.814147.
[3] Kluger BM, Krupp LB, Enoka RM (2013), Fatigue and fatigability in neurologic illnesses: proposal for a unified taxonomy. Neurology. , 80 (4): 409-16, https://n.neurology.org/content/80/4/409 ; PMC article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589241/
Related discussions on S4ME:
[4] Objective assessment of diverse types of MS related fatigue and fatiguability, https://www.s4me.info/threads/objec...of-ms-related-fatigue-and-fatiguability.4241/
[5] Measuring fatigue. Discussion of alternatives to questionnaires: https://www.s4me.info/threads/measuring-fatigue-discussion-of-alternatives-to-questionnaires.7325/
[6] suggestion on how to use accelerometers: https://www.s4me.info/threads/measu...ernatives-to-questionnaires.7325/#post-130804
(*) This is an amended version of a comment made in reference
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Yes do post here if you are happy to.
MSEsperanza
Senior Member (Voting Rights)
Has anyone had problems with submitting the survey.
I have heard that several parents have been having problems. Some have persisted and have manged after several attempts. Others may well have been put off trying or completing it.
If this has been an issue, especially since mid June, we could try and extend the deadline.
I have heard that several parents have been having problems. Some have persisted and have manged after several attempts. Others may well have been put off trying or completing it.
If this has been an issue, especially since mid June, we could try and extend the deadline.
Andy
Retired committee member
I made several submissions and had no problems.
Deadline now extended for 48 hrs, till 5pm Weds 7 July.
Several parents had difficulties with submitting the survey in last week or two of June. This was mentioned on the Parents FB Group, but I hadn't picked this up till today as been on holiday.
So extension is for any who gave up trying to submit, or were put off filling it in.
@Andy or @Trish are you able to highlight the extended deadline at the start of the thread?
Several parents had difficulties with submitting the survey in last week or two of June. This was mentioned on the Parents FB Group, but I hadn't picked this up till today as been on holiday.
So extension is for any who gave up trying to submit, or were put off filling it in.
@Andy or @Trish are you able to highlight the extended deadline at the start of the thread?
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My apologies if I missed it but will the James Lind Alliance release a collation of the input they received and if so, have they said when?
And on a related note, has the MRC run such an exercise recently? Outside of the funding for Decode, it all looks old - e.g. this call for research into "Understanding the mechanisms of CFS/ME" – is listed as 2011 on their site. Am I missing something?
And on a related note, has the MRC run such an exercise recently? Outside of the funding for Decode, it all looks old - e.g. this call for research into "Understanding the mechanisms of CFS/ME" – is listed as 2011 on their site. Am I missing something?
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The steering group, assisted by an information analyst, are now in the process of producing a long summary of questions. This long list is checked to ensure none have been answered by high quality research. This second list will then be available for people to pick their most important top ten. The top 25 of these will be taken to a workshop to work out a top ten.
MRC funding has been minimal, except for PACE, and now DecodeME.
The small group of psychs and their followers, who are strongly committed to their psychogenic theory of ME/CFS, seem to have ways of controlling medical, academic, media and thus public views of ME in the UK.
MRC funding has been minimal, except for PACE, and now DecodeME.
The small group of psychs and their followers, who are strongly committed to their psychogenic theory of ME/CFS, seem to have ways of controlling medical, academic, media and thus public views of ME in the UK.
Andy
Retired committee member
For what it's worth, DecodeME is joint funded by the MRC and the NIHR.
I think that I would view it as the BPSers occupying a vacuum created by disinterest. As we've seen from all the surprise around the world that things like Long Covid can exist, hardly anybody has considered post-infectious chronic conditions as anything worthy of investigation, so that has allowed the BPSers to set up camp and establish themselves as the 'experts' rather than that they are political masterminds.
rvallee
Senior Member (Voting Rights)
Academic squatting.