Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

I have limited context, and I'm also aware of how challenging it can be to create a good questionnaire, however my thought on all of these questions, and probably some of the others as well,

is that it's not clear whether the person answering should factor in the potential travel to the location that these activities might happen at.

 

Hey this is pretty close to the questionnaire I had in mind. Just take regular activities of daily living, ranked by order of exertion, and grade them according to how sustainable they are. Some similar ideas to some questionnaire that was discussed a while ago, Pittsburgh something, but better.

This looks smart. That's a nice change from the usual. There's work to do on proper gradation of limitations as they relate to the level of exertion, for the questions to be truly representative, but the idea seems right to me.

 

I don't recall this being discussed in the video. They're probably not at that stage yet as they're still refining the questionnaire itself.

 

Professor Kristian Sommerfelt talks about the questionnaire's development at the IIMEC15 Conference

Very thorough process by the look of it. Basically finished now and ready to go. Hasn't been published yet but will be, and the questionnaire developers are open to other researchers using the questionnaire now, as it is (English version has been created)

Seemed well received by the audience so hopefully it will be taken up widely

One minor criticism: the acronym FUNCAP grates. Stands for Functional Capacity, I think, so how about adding another C to make it FUNC-CAP?

Brief discussion during the Q&A about the (in)appropriateness of the term 'mild', suggested alternative: Grade-1-ME, Grade-2-ME, etc

https://www.youtube.com/watch?v=9o9KLSvHV8E

 

This is really good. Dr. Sommerfelt strikes me as a scientist who values meaningfully involving patients to gather their experiences, and understands and applies how they explain the illness--that PEM causes a reduction in function for several days.

 

Thank heavens. Then they'll be familiar with ME when they become doctors.

 

No, we are not setting a cut-off score for being able to work etc.
The questionnaire looks at various domains, and having a low score in certain domains, like "being upright" og "sensitivity to light and sound" may be extremely diableing, even if you score higher in other domains. For most patients there is a large degree of corrolation, but there is also some who score very low in some domains, and higher in others. So totaling up the score would be misleading.

 

Start of merged preprint thread

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Effective tools to assess functional capacity (FC) are severely lacking which has significant consequences for timely diagnosis, assessments for patient disability benefits and assessing the impact and effectiveness of interventions. In interventional research the inability to assess FC can result in an incomplete assessment of the potential effect of the intervention. Specifically of concern is that if an intervention is effective in reducing symptom load, patients may increase their activity level to reach a pre-intervention symptom load. Thus, if FC is not accurately assessed, beneficial treatment outcomes may be missed.

To address this issue, using extensive, repeated patient feedback we have developed a new questionnaire, FUNCAP, to achieve optimal FC assessment in ME/CFS patients. The questionnaire covers eight domains and activity types: A. Personal hygiene / basic functions, B. Walking / movement, C. Being upright, D. Activities in the home, E. Communication, F. Activities outside the home, G. Reactions to light and sound, and H. Concentration. Through five rounds of anonymous web-based surveys and a further test - retest validation round, two versions of the questionnaire were developed; a longer version comprising 55 questions (FUNCAP55) to improve diagnostic and disability benefit/ insurance FC assessments and a shorter version (FUNCAP27) for interventional research and less extensive FC assessments. FUNCAP may also be useful in other conditions where fatigue and PEM is present, such as Long Covid.

https://www.preprints.org/manuscript/202309.2091/v1

 

Here is the preprint.

https://www.preprints.org/manuscript/202309.2091/v1

 

Looks very useful to me.

The supplementary material includes the full questionnaire. It consists 55 concrete questions about activities where you can give 7 different scores, depending on how impactful it would be for you (thus including PEM).


It always frustrates me that many functional assessments expect a yes or no answer: can you do this activity or not? If you have ME/CFS the answer is often yes but then my capacity is reduced the next days and I have to limit other activities, etc.

The authors make a good point here, which is often overlooked:

"Specifically of concern is that if an intervention is effective in reducing symptom load, patients may increase their activity level to reach a pre-intervention symptom load."
​

Hope that other research groups will try to test and use this questionnaire.

 

We have allready talked to researchers who want to use FUNCAP in upcoming studie, so it will probably tested soon.
We have had positive feedback from clinicians.

 

i cannot follow forum or threads adequately but:

is this adequately aware of disease progression? and adequately aware of levels of severity?

unless i am missing something, which is likely given that i only saw this post, this is unsuitable.


for context, on teh scale that has moderate = housebound [leave house once every 6 months or so] and severe = bedridden [vertical for bathroom], i am relatively recently at very severe. my doctor diagnosed me as such. i a very close to extremely severe.


each new severity level is a qualitatively different disease in a sense. it is not "more of the same just worse". it is like normals thinking m.e. = marathon run pleasant fatigue.


[digression but for example, for most of my life i have had delayed/reversed phase circadian sleep. doing what my body wanted was best for my body; fighting it to meet society's whims and desires and norms and manufactured needs was wrong. but recently, it feels to me like the body must have many diurnal / circadian rhythms [cell waste, consolidating memories, immune resetting, who knows], and now, more of them are out of sync. the result of that, it feels like, is that fighting the reversed phase is better for me because sleep before dawn is highly significant for health/pem although extremely difficult to achieve.]


i must be missing something because here is my case: if i have to exert or get hit with intolerances [e.g. standing up for a few seconds, talking, eating, lifting arms, mold, noise: any impact on system], i can experience worsening.

that worsening can be, for example, a very severe worsening of oi or cognition or stamina. it can vary and it is not always predictable.

if i am lucky, the worsening from that one exposure/exertion/intolerance exists only at that time, or only for hte next few days, as referred to in the picture in the post i am replying to. [also, incidentally, the worsening can be one of hte answers or more than one simultaneously. not mutually exclusive.] but it can also be permanent. i.e. never recover to any given point after it.

this has occurred many times. this seems a likely component of my progressive course. i do not know what the other components are. in principle maybe much of deterioration is due to the accumulation of pem-causing events.

significantly, if i get good restorative sleep, perhaps needing also on nights /after/ the night of the exposure, which might require high levels of medicines due to very screwed up sleep and diurnal / circadian cycles, i /might/ get back toward, or even back to, the pre-exposure status.

[it is possible that e.g. next-day worsening is to some degree a consequence of sleep on exposure night being screwed up.]

restorative sleep is for me /healing/. [it is not a brief respite, except in that further pem later makes me worse.] in principle, if no further pem [not in practice given env, internal body functions, etc.] then that restorative sleep could keep me at its level for long periods.


btw, there are more things than functioning that matter or for deciding whether treatment works etc. i hope the authors ack that.


in the above, i brought up several things that seem inconsistent with the question format matching things like a case like mine, or progressive course, higher severity levels than very mild, the role of restorative sleep, permanent worsening, and more.

to me, those are /essential/ attributes of the disease for at least some pwme. it doesn't even mention being knocked out for weeks. that is what francis collins was so expressively amazed by in an interview with charlie rose. perhaps collins couludn't imagine worse than weeks.

due to the exponentially-worse levels thing or the match/nuke thing, or othr resasons, it is infamously difficult for even pwme to accurately imagine worse severity than their own, or one's patients if one is a doctor. i'd like pwme and biomedicine to get past that. oh, and society.

the above seems related to the "the order of magnitude is off" problem which i have a thread on someplace with i think those words in the title.

the above also implies my intolerances conception of pem [viz. pem/pene is not only caused by cognitive, physical, or emotional exertion, and not only exertion as normally defined, but also oi, mold, and ANY impact to the system].

also, maybe most pwme recvover by time alone. but even if so, i am not sure that that is always the case. it could be e.g. in large part sleep + lack of further pem. [incidentally, i want a positive english word for lack of iimpact tot he system. like peace is sorta lack of war or noise.]


[as an aside, i usually cannot view any white-background pictures; text transcriptions/ocr of them would be useful to me as a forum member. they would also allow search. otoh it might be hard to transcribe.]


ETA: maybe francis collins was amazed by the duration of hte disease being weeks rather than by pem being weeks. either way.

 

I like that they consulted patients so much. I think I will submit this form when next being assessed for social welfare. It's a pretty quick way of conveying inability to work at all.

One of the things I would change is the gulf between 0 (I cannot do this) and 1 (I feel pants for at least 3 days if I do this). Some activities set me back for weeks/months/years, and have to be done eg some medical appointments.

Am not sure about the concentration section. I think it could make it look like a person could potentially do office-type work from home when they might not be able to do that at all. Part-time work would require a LOT more ability than being able to read a text, read an A4 page, do a simple sum in your head or write a text message. When my ability to do part-time work fizzled out, I was still able to do 46-54. Would I have been able to work from home? No.

Ability to write or produce written documents (usually having assimilated plenty of other verbal and written info) is missing from the communication and concentration sections, but is a key part of many jobs.

 

The authors of this paper and the patients who helped them have done superb work. I have several points of strong praise:

• The entire questionnaire is based around PEM, which acknowledges the most specific and disabling symptom of ME
  
• Unlike most questionnaires, the activities given are highly specific, often stating lengths of time to give you a precise idea
  
• The questionnaire distinguishes clearly between different severity levels (see figure 1 on page 9/PDF page 10)
• Scores change smoothly from very severe to healthy. The range of activities presented is wide enough that people don't bottom or top out.

They don't ask about how much trouble you have doing things because of symptoms you had before you attempted an activity, like poor concentration or fatigue. However, existing questionnaires already capture that.

I hope that in a few years this will be a standard tool for evaluating PEM.