Why are people not affected by MECFS interested in our illness?

[Dr.Patient]

Why are people who are not affected, or have somebody close to them affected, even interested in talking about our illness? Why are physicians or members of organizations who have no acquaintance with our illness even interested in making comments? I don't understand. This illness is hardly a glamorous one. It is not even there on talk shows.

How do they even hear about our illness?

Even if they heard about it, why do they see a need to comment (negatively) on this?

Why does this illness even pique their interest?

I just don't understand.

 

[halcyon]

I've pondered this some. I think there are a lot of people with political or personal beliefs that aid and welfare/disability shouldn't be given to people, especially those that aren't "visibly disabled". I believe these people see us as malingerers that are just trying to live off the system. It's clear they don't actually understand what the illness really is because they just glom on to the fatigue part of the illness and believe that's the entirety of it. They think, "why should someone who is tired all the time get disability, I'm tired all the time too!".

Unfortunately I believe a lot of doctors share similar views, as they get tired of people coming to them constantly trying to get disability for any little thing, at least that's how I have seen some doctors portray it. Doctors are the ones that should know better and should know just how serious and disabling the disease actually is.

 

[CantThink]

...
It's clear they don't actually understand what the illness really is because they just glom on to the fatigue part of the illness and believe that's the entirety of it. They think, "why should someone who is tired all the time get disability, I'm tired all the time too!".

This is spot on IMO.

I think part of it has to do with how society raises children - to believe doctors can diagnose everything (easily), that doctors can always cure what's wrong, that serious illness involves looking ill or having an obvious visual identifier... That our worth comes through being productive and achieving - education, career, money... So anyone who is unproductive and doesn't look obviously I'lle must be either not severely sick or a bit of a faker. The same goes for why we're not fixed - why the doctors can't cure us etc. Healthy people probably feel it's not that serious if there's no common treatment given.

I have other diseases in addition to M.E. and friends with other diseases - all invisible - and really none of them are acknowledged well... They might have more medical research backing them up or treatment options, but a lot of it comes down to: can others see what's wrong, or is it famous (known) for killing people (cancer, AIDS, Ebola etc).

 

[deleder2k]

Here is my list:

- No biomarker
- Labeled as a "Women's disorder"
- No treatment as of today
- No $$ for research
- Psychobabblers
- Still highly controversial (some even doubt its existence)
- A "low status disease"
- A jungle of treatment options with no basis in reality that "cure" patients including the use of Q10, herbs, methylation and so on

 

[Aurator]

At the risk of making a sweeping psychobabbly generalisation* (psychiatry doesn't always err, surely!), ME's poorly understood status and the physically abject condition of the people suffering from it mean that PWME are an attractive target for scapegoaters, who will always welcome the chance to indulge in a gratifying discharge of self-dissatisfaction and aggression towards people who can protest against, but not evade or refute, unmerited discredit and vilification.

* In fact the scapegoat falls within the province of anthropology primarily, not psychology/psychiatry.
James Frazer's The Golden Bough gives some interesting insight into the role of scapegoats in ancient cultures:

"The Athenians regularly maintained a number of degraded and useless beings at the public expense; and when any calamity, such as plague, drought, or famine, befell the city, they sacrificed two of these outcast scapegoats."
Quoted from Plutarch.

 

[DanME]

I will give you some insight from the doctors perspective. During my time at medical school, I heard doctors speaking about CFS a couple of times.
They were always annoyed about patients, claiming to have it. From their perspective the patients just invented it to get attention. One doc even told me, that he was sick of patients inventing diseases like CFS and histamine intolerance. It hasn't been in their curriculum and the fact, the cause and pathophysiology are still unknown, doesn't help either. Most doctors don't have the time to do their own research and to read a lot of papers. They learn about new findings and treatments at conferences and from other docs and scientists, coming by and doing presentations.

Also I have to say it's true. A lot of patients claim to have stuff, they clearly don't have. Some of them are just anxious. It will blow your mind, how often patients think, they have a brain tumor or cancer and the doctors cannot convince them otherwise. It is a frustrating experience for all health care professionals, who need the time for treating the real cases.

Of course ME/CFS is a real physiological disease, but the opinion of most doctors will only change, if new convincing findings pop up at conferences (or Prof Lipkin comes by and explains it to them in person). That's why, serious studies with large cohorts are so important for our cause.

Also medicine sadly invented an easy (and mostly wrong) solution for all cases, we don't understand yet. Psychosomatics. If all tests come back negative, but the patient still has symptoms, a lot of doctors will refer the patient to the psychiatry department and the "It's all in your head" treatment is going to start. Of course, we know plenty of examples, where this attitude has been wrong all along. MS was once the "housewife's disease", Ulcers were caused by stress and smoking, Cancer was caused by repressed feelings, Schizophrenia was caused by "cold mothers". It turned out to be rubbish. But the psychosomatic model is still extremely popular, even though it was never been proven to be correct (and in my opinion will eventually land in the waste bin of science).

 

[worldbackwards]

degraded and useless beings

That's me!

 

[A.B.]

Why do people discriminate against minority groups? There seems to be a dark human instinct to attack those who cannot properly defend themselves. Some degree of dehumanization is also required, and psychiatry provides it.

 

[Mij]

I used to think it was immaturity and ignorance but I'm also starting to believe there's a darker side.

 

[Never Give Up]

I think there is a primal instinct to be on the look out for danger and to work to protect oneself from danger. Illness is a real threat and an area that some patrol. Then they become frightened at the thought that it could happen to them or someone they love. Physicians are defending their time and their "illness beliefs". At some point they turn on the victim as doing otherwise is too psychologically distressing.

 

[geraldt52]

Ever observe the "pecking order" phenomenon in chickens? There seems to be a "need" to rid the group of the weakest and most vulnerable...or at least force them to remain at a distance. Sound familiar?

 

[worldbackwards]

Why do people discriminate against minority groups?

Now there's a one!

I tend to think it's a lot to do with power, those who have it, those who don't and those who are made powerless by one group who look to to take it out on another. In "The Spirit Level" (Wilkinson and Pickett), which deals with inequality within societies, they call this 'The Bicycle Effect', describing how people will often bow and scrape to their masters, then kick out at the people down below them to compensate for their humiliation. An example would be how, after the 2008 crash, many resented the bankers, but saved their real hatred for the unemployed, sick and disabled, who were labeled as causing the crash with their expensive freeloading (an attitude helped not insignificantly by BPS beliefs).

The disabled are always a easy target for this; they're 'different' in some way, and difference is always punished by those lacking in empathy, and weak-minded enough to not think too closely about their beliefs; plus they get attention that other people don't (care, help, benefits) which that lack of empathy can convert into special privileges, choosing to see what they would like for themselves (someone to do nice things for them) and omitting that which they wouldn't like (having to wee in a bucket, not to leave the house, having no legs, etc). Perhaps there is a degree of denial involved, punishing the weak to ward off the idea that, one day, that could be them - the general cruelty and neglect directed towards the elderly comes to mind

ME occupies a special place in public discourse, thrice cursed as it is.
1. We are 'different'
2. We have an invisible disability. This is tagged by doctors as a "mental health problem" so we can both be classed by some as as 'nutters', accentuating the superiority of those clearly immensely stable and balanced people, and, in a simultaneous act of double-think, having nothing 'really' wrong with us anyway, so we shouldn't require any special treatment.
3. We refuse to accept our diagnosis, which also means we are
i) refusing to comply with authority, which always breeds bafflement and resentment amongst the weak-minded (see above)
ii) refusing to engage with our illness, which means we are dragging out our privileges for all they're worth. Again, the dubious nature of these privileges is not investigated too closely - one wouldn't want to get too close to empathy as it would defeat the point, which is to find someone to take their own boring, shit lives out on.

One might say, of course, that I was trying to evince a kind of intellectual superiority for myself to compensate for my weakness in the face of these people who threaten my 'privileges'. Ho hum.

 

[chipmunk1]

Also I have to say it's true. A lot of patients claim to have stuff, they clearly don't have. Some of them are just anxious, some of them seek attention. It will blow your mind, how often patients think, they have a brain tumor or cancer and the doctors cannot convince them otherwise. It is a frustrating experience for all health care professionals, who need the time for treating the real cases.

.

Actually i have to disagree with that. I don't think it is as described. I think a lot of patients do believe that they have stuff they don't have while the doctor believes they have other stuff they probably don't have.

Most people don't go to the doc for fun. To get attention? Much better ways to get it so i doubt this explains why people with no obvious pathology visit doctors.

1. If there is something wrong with you, you are often the first to sense it long before the doctor can diagnose something with a lab test.

2. People believe they have a brain tumor even when they don't find one. Well that doesn't mean that these folks don't have anything wrong with them. Worrying and being concerened is normal when experiencing distressing symptoms. iSome do it more than others but that doesn't mean that they are making it up.

Just because there is no brain tumor doesn't mean that something else is going on.

3. Patients that are obviously just anxious?

Most medical professionals still don't understand that there is an enormous number of rather subtle physical problems that can cause (directly or indirectly) psychological distress and personality changes.

example. hormonal imbalances, allergies , immune system etc.

even the hypochondriac might have an undiagnosed condition that makes him unsually 'hysteric'

Conclusion:

Most people who see a doctor have something even when it often can not be reliably diagnosed.

The catch- all explanation can never be proven e.g: Attention seeker, hypochondriac, bored with life etc.

 

[Aurator]

Of course, we know plenty of examples, where this attitude has been wrong all along. MS was once the "housewife's disease", Ulcers were caused by stress and smoking, Cancer was caused by repressed feelings, Schizophrenia was caused by "cold mothers". It turned out to be rubbish.

You would think, then, that anyone who was aware of these precedents (and surely most doctors are) would have the common sense (I don't say the humility, as humility needn't come into it) to see that the still prevalent view of ME as a psychological problem might just be rubbish too.

Of course ME/CFS is a real physiological disease, but the opinion of most doctors will only change, if new convincing findings pop up at conferences (or Prof Lipkin comes by and explains it to them in person).

I respect their need for hard cold empirical evidence, and I endorse that need. My only criticism is that instead of doing the logical thing and suspending judgement in the meantime, too many doctors are prepared to give their assent, whether active or passive, to potentially very harmful treatments the scientific evidence for which is even more slender than the current biomedical evidence for ME, which they insist is still insufficient to act upon. Their pretensions to scientific rigour look a little hollow as a consequence, and their human frailty looms a little too large.

 

[ukxmrv]

I went to a talk by a doctor who has an interest in ME and CFS and he said that doctors are running out of groups that they can "legitimately" direct their hate at.

(or words to that effect).

 

[DanME]

Actually i have to disagree with that. I don't think it is as described. I think a lot of patients do believe that they have stuff they don't have while the doctor believes they have other stuff they probably don't have.

Most people don't go to the doc for fun. To get attention? Much better ways to get it so i doubt this explains why people with no obvious pathology visit doctors.

1. If there is something wrong with you, you are often the first to sense it long before the doctor can diagnose something with a lab test.

2. People believe they have a brain tumor even when they don't find one. Well that doesn't mean that these folks don't have anything wrong with them. Worrying and being concerened is normal when experiencing distressing symptoms. iSome do it more than others but that doesn't mean that they are making it up.

Just because there is no brain tumor doesn't mean that something else is going on.

3. Patients that are obviously just anxious?

Most medical professionals still don't understand that there is an enormous number of rather subtle physical problems that can cause (directly or indirectly) psychological distress and personality changes.

example. hormonal imbalances, allergies , immune system etc.

even the hypochondriac might have an undiagnosed condition that makes him unsually 'hysteric'

Conclusion:

Most people who see a doctor have something even when it often can not be reliably diagnosed.

The catch- all explanation can never be proven e.g: Attention seeker, hypochondriac, bored with life etc.

Yes, you are probably right. All patients have a good reason to go the doctor. And my statement about seeking attention wasn't very well thought out.
I deleted it from the above statement. Though I have to say, more people than you think, suffer from hypochondria. And they really suffer. I think, most of the times they have an anxiety disorder and panic about minor symptoms, which will sort out themselves pretty quickly. I even have one in my family. In this case, the patient shouldn't be dismissed as an annoying attention seeker, but should be referred to psychological help. Of course it is hard to differ between patients, who have a subtle physical problem and to differ between patients, who just have hypochondria. But it is a real phenomenon, which will usually resolve itself, if the underlying anxiety is treated. I know, this a weird statement coming from a ME patient.

 

[Sidereal]

The way I look at it, hypochondria is an illness too. The brain is generating all that anxiety. Doctors dismiss patients with hypochondria by saying "there is nothing wrong with you" when in actuality something is terribly wrong, it's just not cancer or whatever the patient thinks.

 

[DanME]

The way I look at it, hypochondria is an illness too. The brain is generating all that anxiety. Doctors dismiss patients with hypochondria by saying "there is nothing wrong with you" when in actuality something is terribly wrong, it's just not cancer or whatever the patient thinks.

Yes, I agree with you!

 

[chipmunk1]

Yes, you are probably right. All patients have a good reason to go the doctor. And my statement about seeking attention wasn't very well thought out.
I deleted it from the above statement. Though I have to say, more people than you think, suffer from hypochondria. And they really suffer. I think, most of the times they have an anxiety disorder and panic about minor symptoms, which will sort out themselves pretty quickly. I even have one in my family. In this case, the patient shouldn't be dismissed as an annoying attention seeker, but should be referred to psychological help. Of course it is hard to differ between patients, who have a subtle physical problem and to differ between patients, who just have hypochondria. But it is a real phenomenon, which will usually resolve itself, if the underlying anxiety is treated. I know, this a weird statement coming from a ME patient.

i agree with you. there are actually many "hypochondriac" patients but it seems that many physical conditions affect the mind more than previously thought so it is far more likely to see hysterical symptoms when physical illness is present.

even cases of anxiety may turn out to be an organic problem one day. From what you read Depression once considered to be purely psychological illness, is now viewed by many as a brain disorder, Schizophrenia was viewed a a psychological illness 40 years ago, today it is a brain disease.

 

[Insomniac]

There are people who intentionally pretend to be ill to get benefits. I am not talking about hypochondria or real depression.

Perhaps they think we are one of them.

Fact is lazy or shifty people do exist. It is not
related to real depression or suffering. British TV viewers- have you seen "The Royle Family". Perhaps they think we all like that but using some strange conspiracy of "CFS".

I thought the original question was about those *very* few healthy people who take an interest and actually believe and want to help. I always wondered why Dr Goldstein went out of his way to help patients.