4 ms·

Severe ME/CFS. I am a carer for my wife who has this forgotten & hidden disease. I am so glad Physics Girl is getting better with rest!

tednoob 2y ago
It seems it is not just rest but that she had some procedure done as well. https://youtube.com/shorts/ndhu7uo3PrI?si=pPzpDk4lLw3eRf0j https://youtube.com/shorts/ndhu7uo3PrI?si=pPzpDk4lLw3eRf0j
- FlyingAvatar 2y ago
  Indeed she was not apparently getting much better until she got the nerve block procedure a few months ago.
omnibrain 2y ago
The state of all things Me/CFS is so bad. I remember reading about cases as a child in some boulevard or women’s magazine at my grandmas house, so it must have been about 25 years ago. Seemingly nothing happened since then. Even the explosion of cases after Covid hit somehow doesn’t lead to change. In Germany many doctors still don’t know it, a lot of them think it’s psychological. There is some research, but it looks like the study of the promising compound „BC007“ got botched by bad study design, so even after some very promising results in some participants it is likely to get scrapped. „Hidden disease“ fits it so well, because the people affected „just disappear“, too weak advocating for themselves and with potentially every activity leading to a crash.
- Vampiero 2y ago
  > a lot of them think it’s psychological. no worse feeling in the world than hearing a doctor confidently tell you that it's all in your head and that you're wasting their time. Ask me how I know..
  - rvense 2y ago
    "Are you bleeding?" "No." "It's probably stress, then."
    - em-bee 2y ago
      if only we could objectively (and easily) measure pain and energy levels (feeling tired) and even stress. stress is used here as a dismissal (not by you but the hypothetical doctor you are parodying) but stress too is a real health factor that people need help with.
      - Intermernet 2y ago
        Nobel Laureate Barry Marshall (co discoverer of Helicobacter Pylori, cause of stomach ulcers) gave a talk to a graduating class at the university he went to (can't find link, but it's on the net somewhere). He talks about "stress" being a fertile area of research for medical advances. His argument is that stress is rarely the direct cause of anything. It might be a secondary cause, or it might be a symptom, but research into ailments currently attributed to "stress" is a really good direction for the aspiring young medical research scientists out there.
      - rvense 2y ago
        Yeah, sorry, that wasn't meant to be dismissive of stress or burnout. There's probably a reason doctors always ask about it, but it can be an annoying to have to talk about your job when you've got physical symptoms. (As a sidenote, why do doctors always assume stress is work related? Work is fine, but have you looked at the world...)
        em-bee 2y ago
        that wasn't meant to be dismissive of stress or burnout just to be clear, i knew it wasn't. why do doctors always assume stress is work related? Work is fine, but have you looked at the world oh absolutely so much. i hide in my work when i have stress at home. i can think of two factors. as far as the world is going, most people don't care enough about it to let that stress them, so they do't even see it. myself i avoid stress from world affairs by actively working on making things better (within my means, by showing my friends and neighbors that there is hope yet for the future). but there is also stress at home, and that seems to be also overlooked. i think the reason here is that the doctors are not trained to deal with that and also don't want you to come to them to handle your family problems. there are other trained professionals for that. though personally it would really be nice if we had a family doctor who not only deals with physical but also mental health.
- throwaway9265 2y ago
  I’ve had a family member (Aunt) who’s been diagnosed with CFS since the early 90s whos now in their 60s There is some good research into anti-virals for treatment. And this has been known for at least a decade. A challenge js few doctors will prescribe the course. Anecdotally in the late 00s early 10s my Aunt was losing mobility due to CFS causing neurodegeneration. It was at the point she would sometimes crawl rather than walk up a flight of stairs. Her and I flew to a specialist to get prescribed a cocktail of anti virals (most used for AIDS) and the results were more than a placebo. Within a year the degeneration didn’t just stop but reversed. Its not a cure for her but it allowed her to reverse enough to have a high quality of life and mobility. Over time she’s progressed back down but who's to say if thats age or condition. Here’s a link that discusses it, but a search for cfs and antiviruals will return cfs community material and journals. https://massmecfs.org/more-resources-for-me-cfs/247-antiviral-treatment-creates-improvement-in-a-subset-of-cfscfidsme-patients https://massmecfs.org/more-resources-for-me-cfs/247-antivira...
anonzzzies 2y ago
It seems no doctor takes it seriously still: just you being a whiner and get over it. My mother had it in the 80s and it was really not a thing; must see a shrink, she did, didn't help of course etc etc. Never got any help besides 'well, just rest and don't worry too much'.
- datavirtue 2y ago
  I think it has more to do with the doctor thinking about the absolute nightmare they are going to have to deal with interfacing with insurance companies trying to treat you. The dismissal is just their self preservation. I have noticed that a lot of their job is playing insurance games to treat (get past preauthorizations) easily documented health issues, let alone things like ME/CFS or long COVID.
  - chongli 2y ago
    That’s a US-specific problem. Doctors dismiss patients’ complaints all the time in countries with universal healthcare. I think the issue is much simpler than that: if the doctor is out of ideas (and doesn’t know of a specialist to refer to) they just get frustrated and give up.
- Sesse__ 2y ago
  I am in the process of recovering from CFS (currently back to working 100%, though still not being where I want to be with everything else) and at no point my doctor has done anything but take it seriously. Of course, a doctor can only do so much with a disease as nebulous as this, but he (as well as work, family and other people around me) giving me breathing space and adapting to my situation has been crucial for my improvement, I'm pretty sure.
  - anonzzzies 2y ago
    Good to hear, several people around me did not have that experience with covid, but sure there must be good doctors.

tednoob 2y ago

It seems it is not just rest but that she had some procedure done as well. https://youtube.com/shorts/ndhu7uo3PrI?si=pPzpDk4lLw3eRf0j https://youtube.com/shorts/ndhu7uo3PrI?si=pPzpDk4lLw3eRf0j

FlyingAvatar 2y ago
Indeed she was not apparently getting much better until she got the nerve block procedure a few months ago.

omnibrain 2y ago

The state of all things Me/CFS is so bad. I remember reading about cases as a child in some boulevard or women’s magazine at my grandmas house, so it must have been about 25 years ago. Seemingly nothing happened since then. Even the explosion of cases after Covid hit somehow doesn’t lead to change. In Germany many doctors still don’t know it, a lot of them think it’s psychological. There is some research, but it looks like the study of the promising compound „BC007“ got botched by bad study design, so even after some very promising results in some participants it is likely to get scrapped. „Hidden disease“ fits it so well, because the people affected „just disappear“, too weak advocating for themselves and with potentially every activity leading to a crash.

Vampiero 2y ago
> a lot of them think it’s psychological. no worse feeling in the world than hearing a doctor confidently tell you that it's all in your head and that you're wasting their time. Ask me how I know..
- rvense 2y ago
  "Are you bleeding?" "No." "It's probably stress, then."
  - em-bee 2y ago
    if only we could objectively (and easily) measure pain and energy levels (feeling tired) and even stress. stress is used here as a dismissal (not by you but the hypothetical doctor you are parodying) but stress too is a real health factor that people need help with.
    - Intermernet 2y ago
      Nobel Laureate Barry Marshall (co discoverer of Helicobacter Pylori, cause of stomach ulcers) gave a talk to a graduating class at the university he went to (can't find link, but it's on the net somewhere). He talks about "stress" being a fertile area of research for medical advances. His argument is that stress is rarely the direct cause of anything. It might be a secondary cause, or it might be a symptom, but research into ailments currently attributed to "stress" is a really good direction for the aspiring young medical research scientists out there.
    - rvense 2y ago
      Yeah, sorry, that wasn't meant to be dismissive of stress or burnout. There's probably a reason doctors always ask about it, but it can be an annoying to have to talk about your job when you've got physical symptoms. (As a sidenote, why do doctors always assume stress is work related? Work is fine, but have you looked at the world...)
      - em-bee 2y ago
        that wasn't meant to be dismissive of stress or burnout just to be clear, i knew it wasn't. why do doctors always assume stress is work related? Work is fine, but have you looked at the world oh absolutely so much. i hide in my work when i have stress at home. i can think of two factors. as far as the world is going, most people don't care enough about it to let that stress them, so they do't even see it. myself i avoid stress from world affairs by actively working on making things better (within my means, by showing my friends and neighbors that there is hope yet for the future). but there is also stress at home, and that seems to be also overlooked. i think the reason here is that the doctors are not trained to deal with that and also don't want you to come to them to handle your family problems. there are other trained professionals for that. though personally it would really be nice if we had a family doctor who not only deals with physical but also mental health.
throwaway9265 2y ago
I’ve had a family member (Aunt) who’s been diagnosed with CFS since the early 90s whos now in their 60s There is some good research into anti-virals for treatment. And this has been known for at least a decade. A challenge js few doctors will prescribe the course. Anecdotally in the late 00s early 10s my Aunt was losing mobility due to CFS causing neurodegeneration. It was at the point she would sometimes crawl rather than walk up a flight of stairs. Her and I flew to a specialist to get prescribed a cocktail of anti virals (most used for AIDS) and the results were more than a placebo. Within a year the degeneration didn’t just stop but reversed. Its not a cure for her but it allowed her to reverse enough to have a high quality of life and mobility. Over time she’s progressed back down but who's to say if thats age or condition. Here’s a link that discusses it, but a search for cfs and antiviruals will return cfs community material and journals. https://massmecfs.org/more-resources-for-me-cfs/247-antiviral-treatment-creates-improvement-in-a-subset-of-cfscfidsme-patients https://massmecfs.org/more-resources-for-me-cfs/247-antivira...

anonzzzies 2y ago

It seems no doctor takes it seriously still: just you being a whiner and get over it. My mother had it in the 80s and it was really not a thing; must see a shrink, she did, didn't help of course etc etc. Never got any help besides 'well, just rest and don't worry too much'.

datavirtue 2y ago
I think it has more to do with the doctor thinking about the absolute nightmare they are going to have to deal with interfacing with insurance companies trying to treat you. The dismissal is just their self preservation. I have noticed that a lot of their job is playing insurance games to treat (get past preauthorizations) easily documented health issues, let alone things like ME/CFS or long COVID.
- chongli 2y ago
  That’s a US-specific problem. Doctors dismiss patients’ complaints all the time in countries with universal healthcare. I think the issue is much simpler than that: if the doctor is out of ideas (and doesn’t know of a specialist to refer to) they just get frustrated and give up.
Sesse__ 2y ago
I am in the process of recovering from CFS (currently back to working 100%, though still not being where I want to be with everything else) and at no point my doctor has done anything but take it seriously. Of course, a doctor can only do so much with a disease as nebulous as this, but he (as well as work, family and other people around me) giving me breathing space and adapting to my situation has been crucial for my improvement, I'm pretty sure.
- anonzzzies 2y ago
  Good to hear, several people around me did not have that experience with covid, but sure there must be good doctors.