Und dann lese ich sowas in der Ärztezeitung 😔 Ich bin laut Funcap am unteren Ende von moderat betroffen - sprich laut dem ersten Typen könnte ich von einer Reha profitieren... Und da kann ich klar sagen: nein, tue ich nicht. Ich mache Schadensbegrenzung, weil ohne die Reha keine Unterstützung 🤷🏻♀️
December 15, 2025 at 5:28 PM
Und dann lese ich sowas in der Ärztezeitung 😔 Ich bin laut Funcap am unteren Ende von moderat betroffen - sprich laut dem ersten Typen könnte ich von einer Reha profitieren... Und da kann ich klar sagen: nein, tue ich nicht. Ich mache Schadensbegrenzung, weil ohne die Reha keine Unterstützung 🤷🏻♀️
It really helps. Most of my doctors have no idea what the FUNCAP is but they look at the numbers and go “oh, wow.”
December 12, 2025 at 9:50 PM
It really helps. Most of my doctors have no idea what the FUNCAP is but they look at the numbers and go “oh, wow.”
Either way - people have crashed from his questionnaire and I don't see any effort to engage & try to prevent, or collect that kind of feedback systematically.
He should really go talk to decodeme or the funcap team. Gold standard for ppi.
He should really go talk to decodeme or the funcap team. Gold standard for ppi.
November 24, 2025 at 9:53 PM
Either way - people have crashed from his questionnaire and I don't see any effort to engage & try to prevent, or collect that kind of feedback systematically.
He should really go talk to decodeme or the funcap team. Gold standard for ppi.
He should really go talk to decodeme or the funcap team. Gold standard for ppi.
The FUNCAP questionnaire, designed with extensive patient involvement, measures with concrete benchmarks the severity of functional impairment across a number of relevant dimensions (physical, cognitive, sensory, orthostatic). (7/12)
www.funcap.no
www.funcap.no
Home - funcap.no
FUNCAP is used to assess functional capacity in patients with diseases where post exertional symptom exacerbation (PEM, PENE, PESE) is present
www.funcap.no
November 8, 2025 at 12:08 AM
The FUNCAP questionnaire, designed with extensive patient involvement, measures with concrete benchmarks the severity of functional impairment across a number of relevant dimensions (physical, cognitive, sensory, orthostatic). (7/12)
www.funcap.no
www.funcap.no
We recommend urgent research on whether the FUNCAP can serve as the
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
November 8, 2025 at 12:08 AM
We recommend urgent research on whether the FUNCAP can serve as the
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
while including secondary endpoints (FUNCAP & metrics like step count from wearables) that we expect to be more sensitive & can use this trial to generate data about.
We’ve made sure that the trial is accessible to people who are unable to verbally speak due to the severity of their illness,
4/16
We’ve made sure that the trial is accessible to people who are unable to verbally speak due to the severity of their illness,
4/16
October 30, 2025 at 6:24 PM
while including secondary endpoints (FUNCAP & metrics like step count from wearables) that we expect to be more sensitive & can use this trial to generate data about.
We’ve made sure that the trial is accessible to people who are unable to verbally speak due to the severity of their illness,
4/16
We’ve made sure that the trial is accessible to people who are unable to verbally speak due to the severity of their illness,
4/16
and a last miss that I feel very strongly about - all the proms in these proposals are the usual ones. Often still including BPS proms.
None of them seem aware of funcap which is in a different LEAGUE as far as proms go - wrt PEM understanding, clinical validation, and ease of answering.
None of them seem aware of funcap which is in a different LEAGUE as far as proms go - wrt PEM understanding, clinical validation, and ease of answering.
October 30, 2025 at 2:27 PM
and a last miss that I feel very strongly about - all the proms in these proposals are the usual ones. Often still including BPS proms.
None of them seem aware of funcap which is in a different LEAGUE as far as proms go - wrt PEM understanding, clinical validation, and ease of answering.
None of them seem aware of funcap which is in a different LEAGUE as far as proms go - wrt PEM understanding, clinical validation, and ease of answering.
#MECFS pals—
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
Oh no 😭
I should def be encouraging you to rest, but if you find you can’t, have you heard about this study that wants to see whether FUNCAP can measure PEM? Looking for people to take it while in PEM—you sign up and then they email it to you.
redcap.unimelb.edu.au/surveys/?s=W...
I should def be encouraging you to rest, but if you find you can’t, have you heard about this study that wants to see whether FUNCAP can measure PEM? Looking for people to take it while in PEM—you sign up and then they email it to you.
redcap.unimelb.edu.au/surveys/?s=W...
Pre-Screening Survey
redcap.unimelb.edu.au
October 29, 2025 at 3:30 AM
#MECFS pals—
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
I think the best thing I’ve ever done when it comes to my doctors’ appts is creating a FUNCAP timeline.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
October 27, 2025 at 10:26 PM
I think the best thing I’ve ever done when it comes to my doctors’ appts is creating a FUNCAP timeline.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
My husband and I sat down together and filled it out for different points in time.
It paints a clear picture of #MECFS and the dangers of post-exertional malaise.
I pair my breakdown with this figure from the original FUNCAP paper.
It shows how different severities of #MECFS scored on the FUNCAP.
It’s from a small sample size, but it’s helpful to see the visual representation.
Source: pubmed.ncbi.nlm.nih.gov/38930014/
It shows how different severities of #MECFS scored on the FUNCAP.
It’s from a small sample size, but it’s helpful to see the visual representation.
Source: pubmed.ncbi.nlm.nih.gov/38930014/
October 27, 2025 at 10:26 PM
I pair my breakdown with this figure from the original FUNCAP paper.
It shows how different severities of #MECFS scored on the FUNCAP.
It’s from a small sample size, but it’s helpful to see the visual representation.
Source: pubmed.ncbi.nlm.nih.gov/38930014/
It shows how different severities of #MECFS scored on the FUNCAP.
It’s from a small sample size, but it’s helpful to see the visual representation.
Source: pubmed.ncbi.nlm.nih.gov/38930014/
4) The outcome measures look impressive and include the FUNCAP-55 questionnaire, DePaul PEM-scale, a wearable device, iCPET, and various -omics analyses done at Cornell and Montreal University.
October 23, 2025 at 8:30 AM
4) The outcome measures look impressive and include the FUNCAP-55 questionnaire, DePaul PEM-scale, a wearable device, iCPET, and various -omics analyses done at Cornell and Montreal University.
This is really cool. It will tell you if you are minor/moderate/severe in different dimensions of function in #MECFS. This is the new FUNCAP instrument.
I really think of myself as cognitively impaired but according to the chart, my physical impairments are by far the most profound.
I really think of myself as cognitively impaired but according to the chart, my physical impairments are by far the most profound.
July 10, 2024 at 1:28 AM
This is really cool. It will tell you if you are minor/moderate/severe in different dimensions of function in #MECFS. This is the new FUNCAP instrument.
I really think of myself as cognitively impaired but according to the chart, my physical impairments are by far the most profound.
I really think of myself as cognitively impaired but according to the chart, my physical impairments are by far the most profound.
I’m sure you know what the funcap is… I just learned about it recently. I’m sure that dr didn’t use it for her patients. I do one once a month now because of my app from Visible
November 17, 2024 at 2:25 AM
I’m sure you know what the funcap is… I just learned about it recently. I’m sure that dr didn’t use it for her patients. I do one once a month now because of my app from Visible
FUNCAP27 is an interesting 27-question questionnaire for assessing “functional capacity in patients with diseases where post exertional malaise (PEM) is present.”
PDF versions downloadable from the FUNCAP site: www.funcap.no
Interactive online version here: form.jotform.com/242043953978...
PDF versions downloadable from the FUNCAP site: www.funcap.no
Interactive online version here: form.jotform.com/242043953978...
Home - funcap.no
FUNCAP is used to assess functional capacity in patients with diseases where post exertional symptom exacerbation (PEM, PENE, PESE) is present
www.funcap.no
November 9, 2025 at 4:57 PM
FUNCAP27 is an interesting 27-question questionnaire for assessing “functional capacity in patients with diseases where post exertional malaise (PEM) is present.”
PDF versions downloadable from the FUNCAP site: www.funcap.no
Interactive online version here: form.jotform.com/242043953978...
PDF versions downloadable from the FUNCAP site: www.funcap.no
Interactive online version here: form.jotform.com/242043953978...
The #FUNCAP for patients diagnosed with #MECFS is now available as a free app for iphone: Self-evaluate, track and record your FUNctional CAPacity and your degrees of #PEM: apps.apple.com/app/funcap/i... @tschei.bsky.social 💙🫂💙
FUNCAP
- For patients diagnosed with ME/CFS
- Self-evaluate and record your FUNctional CAPacity
- Assess your capacity using FUNCAP55 or FUNCAP27 by scoring questions across 8 domains, eg
apps.apple.com
December 12, 2024 at 2:45 PM
der Bellscore wird der Krankheit nicht gerecht, da PEM nicht berücksichtigt.
Es gibt mittlerweile deutlich bessere Methoden, hier ist insbesondere der FUNCAP55 hervorzuheben.
hier der Link zum Fragebogen/Rechner: sgme.ch/funcap
und hier der Link zur Studie: www.mdpi.com/2077-0383/13...
Es gibt mittlerweile deutlich bessere Methoden, hier ist insbesondere der FUNCAP55 hervorzuheben.
hier der Link zum Fragebogen/Rechner: sgme.ch/funcap
und hier der Link zur Studie: www.mdpi.com/2077-0383/13...
Schweregrad-Rechner
Mit unserem automatisierten Fragebogen kann der Schweregrad einer ME-Erkrankung einfach und akkurat errechnet werden
sgme.ch
March 6, 2025 at 8:33 PM
der Bellscore wird der Krankheit nicht gerecht, da PEM nicht berücksichtigt.
Es gibt mittlerweile deutlich bessere Methoden, hier ist insbesondere der FUNCAP55 hervorzuheben.
hier der Link zum Fragebogen/Rechner: sgme.ch/funcap
und hier der Link zur Studie: www.mdpi.com/2077-0383/13...
Es gibt mittlerweile deutlich bessere Methoden, hier ist insbesondere der FUNCAP55 hervorzuheben.
hier der Link zum Fragebogen/Rechner: sgme.ch/funcap
und hier der Link zur Studie: www.mdpi.com/2077-0383/13...
funcap te dou até meia noite
October 3, 2024 at 4:23 PM
funcap te dou até meia noite
Finally got around to reading the entire publication. great work. I particularly like that the FUNCAP score was used for the assessment. Great improvement, congratulations. @ciarawrightphd.bsky.social
January 3, 2025 at 5:23 PM
Finally got around to reading the entire publication. great work. I particularly like that the FUNCAP score was used for the assessment. Great improvement, congratulations. @ciarawrightphd.bsky.social
EU PRECISO DA FUNCAP DE PRIVAR O PERFIL BLUSKY ME DE A FUNCAO DE PRIVAR
September 9, 2024 at 5:05 PM
EU PRECISO DA FUNCAP DE PRIVAR O PERFIL BLUSKY ME DE A FUNCAO DE PRIVAR
Questions from the patient's perspective:
1) Is it possible to include the FUNCAP score in the biobank? This would allow for analysis of abnormalities by severity.
2) Does the database contain severely affected patients (e.g., FUNCAP score <3)? I think this group would be the most interesting...
1) Is it possible to include the FUNCAP score in the biobank? This would allow for analysis of abnormalities by severity.
2) Does the database contain severely affected patients (e.g., FUNCAP score <3)? I think this group would be the most interesting...
April 28, 2025 at 7:17 PM
Questions from the patient's perspective:
1) Is it possible to include the FUNCAP score in the biobank? This would allow for analysis of abnormalities by severity.
2) Does the database contain severely affected patients (e.g., FUNCAP score <3)? I think this group would be the most interesting...
1) Is it possible to include the FUNCAP score in the biobank? This would allow for analysis of abnormalities by severity.
2) Does the database contain severely affected patients (e.g., FUNCAP score <3)? I think this group would be the most interesting...
You can imagine the opposite is true for a floor effect; that might come into play for something like a quality of life survey. One survey that was designed for the ME/CFS population is the functional capacity questionnaire (FUNCAP).
March 5, 2025 at 2:57 PM
You can imagine the opposite is true for a floor effect; that might come into play for something like a quality of life survey. One survey that was designed for the ME/CFS population is the functional capacity questionnaire (FUNCAP).
Funcap is a brilliant tool developed by, for and with #pwME, reflects the realities of our condition well, and makes it as easy as possible to fill it out.
Which makes it all the more baffling that the ME Association & bacme are co-developing new PROMS that fail to meet any of those points.
Which makes it all the more baffling that the ME Association & bacme are co-developing new PROMS that fail to meet any of those points.
🆕 New tool for measuring functional capacity developed.
Researchers, clinicians and people with #MyalgicEncephalomyelitis have worked together to develop a new way of measuring functional capacity in this debilitating condition ⤵️
Researchers, clinicians and people with #MyalgicEncephalomyelitis have worked together to develop a new way of measuring functional capacity in this debilitating condition ⤵️
New tool for measuring functional capacity developed - Quadram Institute
Researchers, clinicians and people with ME have worked together to develop a new way of measuring functional capacity
buff.ly
July 22, 2025 at 11:51 AM
Funcap is a brilliant tool developed by, for and with #pwME, reflects the realities of our condition well, and makes it as easy as possible to fill it out.
Which makes it all the more baffling that the ME Association & bacme are co-developing new PROMS that fail to meet any of those points.
Which makes it all the more baffling that the ME Association & bacme are co-developing new PROMS that fail to meet any of those points.
Ich verstehe deine Aussage, tue mich auch bei einigen Angaben im FUNCAP schwer, aber er ist bereits sehr viel differenzierter als andere Instrumente.
Die Range zw. 100 und 1000m ist für uns Betroffene viel, für Außenstehende ist sie weniger bedeutsam.
Die Range zw. 100 und 1000m ist für uns Betroffene viel, für Außenstehende ist sie weniger bedeutsam.
November 23, 2025 at 11:45 AM
Ich verstehe deine Aussage, tue mich auch bei einigen Angaben im FUNCAP schwer, aber er ist bereits sehr viel differenzierter als andere Instrumente.
Die Range zw. 100 und 1000m ist für uns Betroffene viel, für Außenstehende ist sie weniger bedeutsam.
Die Range zw. 100 und 1000m ist für uns Betroffene viel, für Außenstehende ist sie weniger bedeutsam.
If I’d have started taking the FUNCAP sooner I think I might have not spent nearly 2 years ignoring my symptoms & working crazy hours despite not being able to care for myself at all. I just kept desperately hoping a treatment, med, or some other “cure” was right around the corner.
December 12, 2025 at 10:20 PM
If I’d have started taking the FUNCAP sooner I think I might have not spent nearly 2 years ignoring my symptoms & working crazy hours despite not being able to care for myself at all. I just kept desperately hoping a treatment, med, or some other “cure” was right around the corner.
5) For assessing PEM, the review mentions the DSQ-PEM, 2-day exercise testing, and the FUNCAP questionnaire.
December 10, 2025 at 8:50 AM
5) For assessing PEM, the review mentions the DSQ-PEM, 2-day exercise testing, and the FUNCAP questionnaire.