In case anyone is interested, the Visible App has a monthly tracking function for FUNCAP27 and allows you to log your answers and compare previous months. I found that mine dropped considerably after the first month - Not because my capacity dropped, but because I became less deluded about my capabilities. I guess I became more honest with myself.
Personally I think it is excellent and should begin to be referenced (the relevant mobility related parts) in things like PIP claims etc. This would provide greater consistency.
Same here and agreed - though I think that the PIP application form should be different for people with ME as there is currently little room for relapsing/remitting symptoms. If they considered the FUNCAP it would be enormously helpful. Incidentally, as a Visible user I always smile at the FUNCAP thing, because when you are pacing so carefully it's literally a cap on fun!
I’ve thought about this for some time. FUNCAP27 correctly measures the impact of any one thing you can do against anything else. There’s a danger with PIP assessment that it assumes that if you can do something once, you are “Capable of doing it” infinitely throughout a day. One thing people need to remember about FUNCAP though is that the overall score is fairly meaningless and can’t be used to compare your capabilities against someone else’s. I score quite high in sections A, C and G, but poorly in
D, E and H, the latter being the capabilities that would impact my meet the requirements of most work roles. Crucially it’s not basic mobility that holds me back, but ability to reason a safe decision based on what I read two minutes ago.
I and my husband definitely fit the description for ME. After 10 years of going from (mainstream) doctor to doctor, in 2023, I finally found a wonderful ME/CFS doctor, who is unfortunately going to stop prescribing medications this year. He has helped us tremendously just by believing me! He was also the one who discovered my Myasthenia Gravis / Thymoma. I would probably be dead by now if it weren't for him. The mainstream doctors just don't know anything about this disease and perhaps these forms can help them to. Thanks Colleen.
ME 16 years but only about last seven have I been able to take notes, usually in the wee hours, I use Google Keep which is great. I run these through ChatGPT, it's by far the best summary with Clear observations sticking out. PENE is what I must manage every minute. If I don't it will lead to PEM. Mine is equal neurologic and auto and muscle wasting. I'm 65 but have had a dynamic physical and mental career. I'm going to take this assessment also at my best and worst points. I can count on having a worst point at least once a month due to only being able to accomplish my physical projects by overexerting. I'm never sure if I'll make it back to the last baseline, so I am desperately trying to finish the most physical projects, i've tracked how PEM occurs in me. Muscle exertion, micro tears make pain from waste products that can't escape and ATP insufficient production. It's often three days to peak pain, but that is what I've been managing better. With cognitive exertion, my feedback is down to no more than five minutes. When in both PENE and PEM it's the worst. Mental and emotional stress like Internet customer service is absolutely injurious to my health. I'm two different people so I don't see taking an average as useful as gauging the worst which is what is disabling. I wonder if anyone else is also triggered by the name? I've not had anything FUN in 16 years so it feels like it came from the same ignorant folks over at PACE… I know it didn't but…
The "fun" in FUNCAP also caught my attention. Definitely nothing fun about any of this.
I was interested in your comments about PENE and PEM. I consider PEM a vague term that is often misinterpreted by doctors to just mean "malaise" after exercise. Something many conditions deal with. PENE (post-exertional neuroimmune exhaustion) is the more specific term used in the International consensus criteria. I feel PENE fits my situation best.
Great use of ChatGPT! The AI world is moving much faster than I can keep up with.
I agree that PENE is the useful term. I've yet to find any Doctor who understands why using the brain such as using screen time like this requires, induces painful cramps.. and vice versa why using muscles induces vertigo. I've gotten my brain functioning much better and little vertigo now being on HQ for a year, but it hasn't helped ATP energy production. I'm getting desperate so considering stem cells in Mexico, I think you might have a thread on this? Also I completely agree, "malaise" Is as useless as "chronic fatigue" or "natural"…
Thanks, Colleen. Sounds like a great tool. As you've said, there's always been too much "can you do this task or not?" which is just wrong for M.E. and it is so frustrating when I've been asked things in this way during medical appointments.
I have to add that, as a linguist, I'm very glad to see the word "functional" being used properly, with regard to our ability to *function*. It's so frustrating when it is used in a deceptive and incorrect way, as in the derogatory psychological term "Functional Neurological Disorder".
Eyesight issues seem to be common with auto-immune diseases. I wonder if we can abbreviate that as AI diseases? ; -) I have MG now as well, so it all makes sense. Explains the incredible loss of strength in my legs... I can't wait to see what's next! Thank you so much for keeping up with all of this information for us...
Well, that questionnaire was enlightening. I didn't realize how limited I really am. The eyesight problem (no cure) is a serious problem. I don't hear of other ME folks having to deal with it; it really cramps my style.
OK since I can't edit I have a conclusion: my range on every question is 0 - 6.. so does anyone think entering "3" is useful? I can tell you straight away that all doctors I know will absolutely take the best scenario, and deny services, insurance, disability, life… I would never show this to my doctors… And a concerns me that this range which is common is not appreciated. It's like having one good tire on your car, but the other three could blow out any second…
Useless without showing a strong emphasis at maximum disability. Insurance companies will have a field day with this as well!
Well I have to give up after not getting through section A.. Whomever created this test does not seem to have ME? I used to be a CAD operator able to do intense calculations and this gave me a headache. I've been working on a questionnaire much simpler to understand for anyone with my level of cognitive disability. I have the same IQ but doing sequential processing like this is too difficult, big PENE trigger… Six very specific scores? What use is taking an average Now that I think about it? What matters is the weakest link of this chain! I can't possibly do this unless I am at my absolute best baseline! And I'm considered moderate but I go severe at least once a month or more. This is my disability. Sorry but I find this questionnaire most confusing and frustrating. It's anything but "FUN".. it does inspire me to keep working on a much simpler version. It has a "at my best, at my worst" which range is crucial for doctors to understand and articulate limitations. Fun may work for those much more moderate than I… But it feels like it was created by a psychiatrist rather than anyone who understands this disability. None of my dozen doctors would make it through the first section of this complex confusing document! I've got to get better in order to complete mine! at least it inspires me…
In case anyone is interested, the Visible App has a monthly tracking function for FUNCAP27 and allows you to log your answers and compare previous months. I found that mine dropped considerably after the first month - Not because my capacity dropped, but because I became less deluded about my capabilities. I guess I became more honest with myself.
Personally I think it is excellent and should begin to be referenced (the relevant mobility related parts) in things like PIP claims etc. This would provide greater consistency.
Same here and agreed - though I think that the PIP application form should be different for people with ME as there is currently little room for relapsing/remitting symptoms. If they considered the FUNCAP it would be enormously helpful. Incidentally, as a Visible user I always smile at the FUNCAP thing, because when you are pacing so carefully it's literally a cap on fun!
Cap on fun... so true. 😉
I’ve thought about this for some time. FUNCAP27 correctly measures the impact of any one thing you can do against anything else. There’s a danger with PIP assessment that it assumes that if you can do something once, you are “Capable of doing it” infinitely throughout a day. One thing people need to remember about FUNCAP though is that the overall score is fairly meaningless and can’t be used to compare your capabilities against someone else’s. I score quite high in sections A, C and G, but poorly in
D, E and H, the latter being the capabilities that would impact my meet the requirements of most work roles. Crucially it’s not basic mobility that holds me back, but ability to reason a safe decision based on what I read two minutes ago.
It makes sense that it would be useful for disability/PIP.
I and my husband definitely fit the description for ME. After 10 years of going from (mainstream) doctor to doctor, in 2023, I finally found a wonderful ME/CFS doctor, who is unfortunately going to stop prescribing medications this year. He has helped us tremendously just by believing me! He was also the one who discovered my Myasthenia Gravis / Thymoma. I would probably be dead by now if it weren't for him. The mainstream doctors just don't know anything about this disease and perhaps these forms can help them to. Thanks Colleen.
So glad you found someone who not only listened but caught something others missed. I hate losing a good doctor...
ME 16 years but only about last seven have I been able to take notes, usually in the wee hours, I use Google Keep which is great. I run these through ChatGPT, it's by far the best summary with Clear observations sticking out. PENE is what I must manage every minute. If I don't it will lead to PEM. Mine is equal neurologic and auto and muscle wasting. I'm 65 but have had a dynamic physical and mental career. I'm going to take this assessment also at my best and worst points. I can count on having a worst point at least once a month due to only being able to accomplish my physical projects by overexerting. I'm never sure if I'll make it back to the last baseline, so I am desperately trying to finish the most physical projects, i've tracked how PEM occurs in me. Muscle exertion, micro tears make pain from waste products that can't escape and ATP insufficient production. It's often three days to peak pain, but that is what I've been managing better. With cognitive exertion, my feedback is down to no more than five minutes. When in both PENE and PEM it's the worst. Mental and emotional stress like Internet customer service is absolutely injurious to my health. I'm two different people so I don't see taking an average as useful as gauging the worst which is what is disabling. I wonder if anyone else is also triggered by the name? I've not had anything FUN in 16 years so it feels like it came from the same ignorant folks over at PACE… I know it didn't but…
The "fun" in FUNCAP also caught my attention. Definitely nothing fun about any of this.
I was interested in your comments about PENE and PEM. I consider PEM a vague term that is often misinterpreted by doctors to just mean "malaise" after exercise. Something many conditions deal with. PENE (post-exertional neuroimmune exhaustion) is the more specific term used in the International consensus criteria. I feel PENE fits my situation best.
Great use of ChatGPT! The AI world is moving much faster than I can keep up with.
I agree that PENE is the useful term. I've yet to find any Doctor who understands why using the brain such as using screen time like this requires, induces painful cramps.. and vice versa why using muscles induces vertigo. I've gotten my brain functioning much better and little vertigo now being on HQ for a year, but it hasn't helped ATP energy production. I'm getting desperate so considering stem cells in Mexico, I think you might have a thread on this? Also I completely agree, "malaise" Is as useless as "chronic fatigue" or "natural"…
Thanks, Colleen. Sounds like a great tool. As you've said, there's always been too much "can you do this task or not?" which is just wrong for M.E. and it is so frustrating when I've been asked things in this way during medical appointments.
I have to add that, as a linguist, I'm very glad to see the word "functional" being used properly, with regard to our ability to *function*. It's so frustrating when it is used in a deceptive and incorrect way, as in the derogatory psychological term "Functional Neurological Disorder".
Eyesight issues seem to be common with auto-immune diseases. I wonder if we can abbreviate that as AI diseases? ; -) I have MG now as well, so it all makes sense. Explains the incredible loss of strength in my legs... I can't wait to see what's next! Thank you so much for keeping up with all of this information for us...
Seems to be common with auto-immune diseases, plus now I have MG as well. So it makes sense. I can't wait to see what's next!
Well, that questionnaire was enlightening. I didn't realize how limited I really am. The eyesight problem (no cure) is a serious problem. I don't hear of other ME folks having to deal with it; it really cramps my style.
My eyesight fluctuates, but I can mostly manage. That would be an added challenge. Sorry you have that on top of ME.
OK since I can't edit I have a conclusion: my range on every question is 0 - 6.. so does anyone think entering "3" is useful? I can tell you straight away that all doctors I know will absolutely take the best scenario, and deny services, insurance, disability, life… I would never show this to my doctors… And a concerns me that this range which is common is not appreciated. It's like having one good tire on your car, but the other three could blow out any second…
Useless without showing a strong emphasis at maximum disability. Insurance companies will have a field day with this as well!
Well I have to give up after not getting through section A.. Whomever created this test does not seem to have ME? I used to be a CAD operator able to do intense calculations and this gave me a headache. I've been working on a questionnaire much simpler to understand for anyone with my level of cognitive disability. I have the same IQ but doing sequential processing like this is too difficult, big PENE trigger… Six very specific scores? What use is taking an average Now that I think about it? What matters is the weakest link of this chain! I can't possibly do this unless I am at my absolute best baseline! And I'm considered moderate but I go severe at least once a month or more. This is my disability. Sorry but I find this questionnaire most confusing and frustrating. It's anything but "FUN".. it does inspire me to keep working on a much simpler version. It has a "at my best, at my worst" which range is crucial for doctors to understand and articulate limitations. Fun may work for those much more moderate than I… But it feels like it was created by a psychiatrist rather than anyone who understands this disability. None of my dozen doctors would make it through the first section of this complex confusing document! I've got to get better in order to complete mine! at least it inspires me…