5 ms·

I also have a mom who has/had this. It started as fibromyalgia. Then it was multiple chemical sensitivity. Then it was chronic fatigue syndrome. Then it was

I also have a mom who has/had this. It started as fibromyalgia. Then it was multiple chemical sensitivity. Then it was chronic fatigue syndrome. Then it was a autoimmune disorder. Most recently it is an exotic form of lupus with extreme photosensitivity. Each time, like you said, it just went away but was replaced by the next thing. I don't have any doubt that my mom's subjective health experience is real and unpleasant, but after 30 years of this, I do have my doubts about a physiological etiology. The peace I've had to make is that even if it is "in her head," the pain is real.

tasty_freeze 3y ago
> I do have my doubts about a physiological etiology. I hope whatever is afflicting your mom gets sorted out, but please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. As a N=1 counter example to yours, my wife has suffered from it for 20 years and she is still suffering from it, with the same hallmarks the entire time. She also suffers from EDS (Ehlers Danlos Syndrome), which actually came first. Statistically, people with EDS are far more likely to have ME/CFS. If ME/CFS doesn't have a physiological basis, how would explain this -- perhaps that people with EDS tend to develop the same health delusion?
- jdietrich 3y ago
  >please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. The aetiology of ME/CFS should have absolutely no bearing on how we regard people suffering from it. Mental illness is real illness.
  - freedomben 3y ago
    > If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. Absolutely you are correct on this, but at the same time it doesn't change the reality that to many people and doctors, ascribing it to mental illness is essentially a dismissal, which is wildly unhelpful to the person suffering.
  - s1artibartfast 3y ago
    >Mental illness is real illness This is surely true, but they certainly different when it comes to treatment and the role of the sufferer. When it comes to mental illnesses, the patient usually has to be an active participant or even leader in their treatment. That is to say, a doctor can strap someone down and cut out their kidney, but a doctor cant unilaterally change your mental processes. I think both medically and culturally, when something is designated a mental illness, it becomes more of the patient's problem to solve.
  - tasty_freeze 3y ago
    Whatever the ideal would be, we don't have that. In the world we have, classifying it as "it is in your head" does marginalize the problem. But on top of that, you think it is a mental health issue based on your experience. There are millions of other people with ME/CFS (yes, I know there is currently no positive test for it, but is arrived at by eliminating other things) and the cause is (causes are) not known. By throwing it in the basket of mental illness, it means there should be no funding researching the physical causes of it. Finally, there are studies [1] which show mitochondria problems in many people with ME/CFS. That is, modest exercise causes increased cell acidity and/or slow reconversion of ADP back to ATP, starving the cell of energy. How can that be classified as a mental illness? [1] https://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause%3A_Mitochondrial_Failure https://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause%3A_Mitoc...
  - nomel 3y ago
    The problem is, the claim should be based on data. Not having a good mechanism to explain it is not evidence for it being a mental illness. There is very little evidence supporting that it's a mental illness. For FM, a thing that has been classified as a mental disorder as late as 2016, spinal fluid pressures may have a role [1]. Medicine is just absolutely littered with these sorts of dismissals. This is why, at any point in time, you can look back 20 years to what was "standard practice", and be shocked. [1] https://www.healthrising.org/blog/2018/02/24/pressure-mounting-fibromyalgia-caused-high-pressure-brain-intracranial-hypertension/ https://www.healthrising.org/blog/2018/02/24/pressure-mounti...
Aaronstotle 3y ago
My sister is similar, she has fibromyalgia and now she has another condition which no one in my family quite knows, and neither do the doctors. It hasn't been 30 years for me, but I do hope that some doctor can figure it out.

tasty_freeze 3y ago

> I do have my doubts about a physiological etiology. I hope whatever is afflicting your mom gets sorted out, but please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. As a N=1 counter example to yours, my wife has suffered from it for 20 years and she is still suffering from it, with the same hallmarks the entire time. She also suffers from EDS (Ehlers Danlos Syndrome), which actually came first. Statistically, people with EDS are far more likely to have ME/CFS. If ME/CFS doesn't have a physiological basis, how would explain this -- perhaps that people with EDS tend to develop the same health delusion?

jdietrich 3y ago
>please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. The aetiology of ME/CFS should have absolutely no bearing on how we regard people suffering from it. Mental illness is real illness.
- freedomben 3y ago
  > If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. Absolutely you are correct on this, but at the same time it doesn't change the reality that to many people and doctors, ascribing it to mental illness is essentially a dismissal, which is wildly unhelpful to the person suffering.
- s1artibartfast 3y ago
  >Mental illness is real illness This is surely true, but they certainly different when it comes to treatment and the role of the sufferer. When it comes to mental illnesses, the patient usually has to be an active participant or even leader in their treatment. That is to say, a doctor can strap someone down and cut out their kidney, but a doctor cant unilaterally change your mental processes. I think both medically and culturally, when something is designated a mental illness, it becomes more of the patient's problem to solve.
- tasty_freeze 3y ago
  Whatever the ideal would be, we don't have that. In the world we have, classifying it as "it is in your head" does marginalize the problem. But on top of that, you think it is a mental health issue based on your experience. There are millions of other people with ME/CFS (yes, I know there is currently no positive test for it, but is arrived at by eliminating other things) and the cause is (causes are) not known. By throwing it in the basket of mental illness, it means there should be no funding researching the physical causes of it. Finally, there are studies [1] which show mitochondria problems in many people with ME/CFS. That is, modest exercise causes increased cell acidity and/or slow reconversion of ADP back to ATP, starving the cell of energy. How can that be classified as a mental illness? [1] https://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause%3A_Mitochondrial_Failure https://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause%3A_Mitoc...
- nomel 3y ago
  The problem is, the claim should be based on data. Not having a good mechanism to explain it is not evidence for it being a mental illness. There is very little evidence supporting that it's a mental illness. For FM, a thing that has been classified as a mental disorder as late as 2016, spinal fluid pressures may have a role [1]. Medicine is just absolutely littered with these sorts of dismissals. This is why, at any point in time, you can look back 20 years to what was "standard practice", and be shocked. [1] https://www.healthrising.org/blog/2018/02/24/pressure-mounting-fibromyalgia-caused-high-pressure-brain-intracranial-hypertension/ https://www.healthrising.org/blog/2018/02/24/pressure-mounti...

Aaronstotle 3y ago

My sister is similar, she has fibromyalgia and now she has another condition which no one in my family quite knows, and neither do the doctors. It hasn't been 30 years for me, but I do hope that some doctor can figure it out.