ME patient found dead of heart failure and malnutrition

[alex3619]

Mean or average is a tricky beast. For example about half the population is below average IQ (though IQ doesn't measure street smarts). In my experience, ME docs are the ones who finished top of their class. Look at their diplomas the next time you are in their offices. They usually have more diplomas than most docs, and often first class honours. So what does that say about the rest?

The other thing I see is that many ME docs are doc-researchers. They are into the science, not just medicine.

The entire medical system needs radical overhaul, but so does government and the economy. Its a pervasive issue.

As to average age of death, people with ME can live a long time in my view, though we would have what is called a thin tail. That is, in comparison with the rest of the population, at any advanced age, there would be a lower percentage of us compared to the total.

What happened to Mr Hancock could have happened to me. It still might. If a patient who never sees anyone slips into the very severe end of the spectrum then they will be at severe risk.

As for getting food, sometimes church groups can help, and if you have internet and online grocery ordering, they can deliver. There are also (expensive) meal delivery services, though in some areas there are cheaper ones too - in many places they are called something like Meals On Wheels.

I live in a poor area, I moved here for slightly lower rent (cheap rent does not exist unless subsidized), and there are three food banks. The closest is about five doors up. I can rarely make it that far, and they have lots and lots of wheat based stuff ... which I cannot eat. Doh. Dietary intolerances are a big issue in these matters.

 

[Countrygirl]

What happened to Mr Hancock could have happened to me. It still might. If a patient who never sees anyone slips into the very severe end of the spectrum then they will be at severe risk.

Over the decades I have had prolonged episodes when I have been in a similar position. About three years ago I was very sick with an ME relapse and went a whole nine days without food. The rector walked in thankfully to find me in a heap on the floor. He returned later with a small meal for me. It was the best I had tasted.He didn't have time to return, but I did so appreciate his act of kindness.

Next time it happens and I become as ill again, there is no one left (all close to me have died or are now very ill and moving away) )to pick up the pieces. I asked the GP last time I saw her what would I do and would she help. Errr no....GP does not intervene in cases of................ME. It's not real you know. You can do it if you want to. I do shy away somewhat from a slow death and have always kept my exit pack refreshed for when there is no hope of getting any assistance at all.

Dietary intolerances are a big issue in these matters.

When I have peered into the boxes that are the collecting points I have pointed out to the organisers that people with ME and other conditions couldn't eat what is being collected. There does need to be a separate collection for those who cannot eat the mainly rubbishy food that is donated

 

[Sidereal]

Next time it happens and I become as ill again, there is no one left (all close to me have died or are now very ill and moving away) )to pick up the pieces. I asked the GP last time I saw her what would I do and would she help. Errr no....GP does not intervene in cases of................ME. It's not real you know. You can do it if you want to. I do shy away somewhat from a slow death and have always kept my exit pack refreshed for when there is no hope of getting any assistance at all.

I've always felt that there is a separate category in medicine for severe ME. It's not even treated as a psychiatric disorder. It is simply not real. It does not exist. GPs are totally freaked out by it and try to wash their hands of it. They seem to think that they have no responsibility to keep the patient alive if their "deconditioning" and "false illness beliefs" cause them to become unable to move, swallow food or breathe properly. It seems acceptable especially in the UK for a GP to say to a patient that they don't believe in ME as if it were a religion or something. I don't know how they are able to reconcile the obvious extreme symptoms/suffering with the belief that it's all in the mind. If a patient with an accepted psychiatric condition like depression decompensates and let's say they become catatonic and can no longer look after themselves and this is brought to the GP's attention, they will be hospitalised and fed. They wouldn't be allowed to just starve or freeze to death in their apartment.

 

[jimells]

It seems acceptable especially in the UK for a GP to say to a patient that they don't believe in ME as if it were a religion or something.

It's the same in the US. I get medical care from a large group practice. One doctor I was assigned to told me she didn't believe in the illness and fired me. I was then transferred to another doctor and given an appointment. He fired me before the first appointment! Finally I was transferred to a family nurse practitioner who treats other POTS patients. She won't go beyond treating migraine, POTS and sleep problems, but at least she recognizes the illness exists and that I have it.

I don't understand how within one practice some docs can believe an illness exists and others don't. I wonder what kind of friction this causes behind the scenes. I can just imagine how the arrogant "illness deniers" treat the "lowly" FNPs in their practice; probably about the same way doctors mistreat nurses in general.

 

[Gingergrrl]

From what I have learned on PR, there seems to be a widespread systemic denial of ME in the UK versus in the US there is a lot more variability depending on where you live and different beliefs of different doctors.

When I first tried to see an infectious disease specialist, my former cardiologist gave me a referral. I called and the secretary said, "Dr. XXX doesn't see patients with EBV" and hung up the phone. I called back and she said there was no point to make an appt b/c the doctor will not treat patients with EBV. I was stunned that I was blacklisted from a phone call and couldn't even make it through the door!

I saw another infectious disease doctor (and no official CFS diagnosis at that time) and asked him about Valtrex for the treatment of re-activated EBV. He said that there was no such thing as "Re-activated EBV or CFS" and accused me of "Seeking Valtrex" like it was a narcotic. I told him I wasn't even certain I wanted Valtrex, I just wanted to learn my options. He told me about Graded Exercise Programs and in his office my HR was 148 bpm. I asked him how I could exercise with a HR that high and he had no answer. Since he did not believe in CFS, I asked him to test me for other causes of my tachycardia, fatigue, etc, but he refused. He was mean and condescending and I left his office in tears.

However, I have since found a CFS specialist and autonomic cardiologist who believe in my illness and treat me with respect. So in the US, I feel it is a mixed bag. You have to search hard and often be willing to travel and see doctors outside of your geographical area and insurance but it can be done. Whereas in the UK, from what I read, it seems next to impossible!

 

[Countrygirl]

I don't understand how within one practice some docs can believe an illness exists and others don't. I wonder what kind of friction this causes behind the scenes. I can just imagine how the arrogant "illness deniers" treat the "lowly" FNPs in their practice; probably about the same way doctors mistreat nurses in general.

Not long ago, as a national contact for the illness I received a phone call from a distressed local doctor who said he was sure he had ME, but when I asked for his name and a address so that I could send him information he refused to give it to me. He said that he dared not risk his colleagues discovering who he was because they regarded all patients with ME with 'contempt'. He told me that he was too ill to work and was applying for medical retirement, but would claim that he had depression as he said they regarded that diagnosis with less 'contempt' than ME.

I was also astonished that the medical profession still viewed depression with scorn.

At one point, again as the co--ordinator of the county patient support group, I tried repeatedly to make an official complaint against the medical practice of the town where the vicar died of ME and neglect after being told for 20 years that the illness was 'all in your head'. (The GP had refused to sanction 'care' when the patient's wife was admitted to hospital for a prolonged period.) I repeatedly had the phone put down on me after they told me that they did not accept complaints about doctors from people with ME. it is apparently 'open season' on us and the medical profession can literally get away with murder if their victim has a diagnosis of ME.

 

[Gingergrrl]

@Countrygirl I am so saddened by all these stories and don't understand why doctors view their patients with contempt whether they have ME, depression, or any other illness. I have witnessed and experienced it many times myself (although not to the level in the UK) and I just don't understand it. How can we change this? There must be a way.

 

[Countrygirl]

@Countrygirl I am so saddened by all these stories and don't understand why doctors view their patients with contempt whether they have ME, depression, or any other illness. I have witnessed and experienced it many times myself (although not to the level in the UK) and I just don't understand it. How can we change this? There must be a way.

The history of medicine strongly suggests that they will only change their attitude when science gets a grip on this illness and presents them with a conclusive test that is easily and readily available.

Our position reminds me of the story of Dr Simmelweiss in the nineteenth century. He became known as the 'saviour of mothers' when he advised doctors to wash their hands before they attended women in childbirth after they had been dissecting dead bodies. The mothers frequently died of 'child birth fever' as a result of the lack of antiseptic procedures, but, with the work of Louis Pasteur and Joseph Lister still in the future, Simmelweiss's colleagues deeply resented his suggestion and refused to oblige. Simmelweiss persisted as he discovered that the death rate for puerperal fever dropped from as much as 35% to 1% if the rules of basic hygiene were adopted by the medical profession. The doctors refused to change their ways, mothers continued to die and poor Simmelweiss was sectioned by his colleagues for his mad idea. Two weeks after being incarcerated by his colleagues he was beaten to death by one of the institution's orderlies.

The medical profession is still enmeshed in this arrogant mind set as their history reveals. Even as recently as the twentieth century, prior to the identification of variola major, the cause of smallpox, the medical profession still held to the belief that the colour red cured the disease. it was the invention of the electron microscope that 'cured' them of this antiquated belief. It never ceases to amaze me that they do not learn by the mistakes of their history.

 

[jimells]

I ... asked him about Valtrex for the treatment of re-activated EBV. He ... accused me of "Seeking Valtrex" like it was a narcotic.

That's really pathetic. I keep picturing a desperate Valtrex Junkie, clinging to their paper prescription and standing lab order, begging the technician to draw some blood to see if their liver is still working.

 

[antares4141]

.

Our position reminds me of the story of Dr Simmelweiss in the nineteenth century.

More recently you also have the cruel and abusive way the medical/psychiatric community treated mothers of autistic children.
Refriderater mother theory
http://en.m.wikipedia.org/wiki/Refrigerator_mother_theory
I'm sure there are many other examples. It seems to me to be human nature to want to kick somebody when their down or different. (And because we're doing it to ourselves morally acceptable) Drs being human are not immune to this and probably to some degree more susceptible if they let their promenant position in society go to their heads. If I had the energy I would like to compile and document all the idiotic things that have been widely accepted in the medical literature not because it had sound scientific bases but because it promoted for a lack of a better term an agenda. God forbid I say it has to do with money that would make me a conspirousy monger. Another example would be 17 years ago dr dean eddel a self professed skeptic promoting on a nationally syndicated radio program the idea gws and CFS are psychological as if it was fact. I wish I could have documented all the times he did this. I've noticed lately the policy is if you cant say something bad about us don't say anything at all.

 

[alex3619]

@antares4141, do you have any links to the Dr Dean Eddel stuff?

This kind of treatment goes way back, right back to the Inquisition. Then it was witches, curses or demonic possession that were to blame, not psych disorders. In more recent times it was people with tuberculosis, epilepsy, both types of diabetes, all cancer and especially breast cancer, and a whole lot more, who were once treated this way.

 

[antares4141]

.

Our position reminds me of the story of Dr Simmelweiss in the nineteenth century.

More recently you also have the cruel and abusive way the medica/psychiatric community treated mothers of autistic children.
Refriderater mother theory
http://en.m.wikipedia.org/wiki/Refrigerator_mother_theory
I'm sure there are many other examples. It seems to me to be human nature to want to kick somebody when their down or different. (And because we're doing it to ourselves morally acceptable) Drs being human are not immune to this and probably to some degree more susceptible if they let their promenant position in society go to their heads. If I had the energy I would like to compile and document all the idiotic things that have been widely accepted in the medical literature not because it had sound scientific bases but because it promoted for a lack of a better term an agenda. God forbid I say it has to do with money that would make me a conspirousy monger. Another example would be 17 years ago dr dean eddel a self professed skeptic promoting on a nationally syndicated radio program the idea gws ans CFS are psychological as if it was fact. I wish I could have documented all the times he did this. I've noticed lately the policy is if you cant say something bad about us don't say anything at all.

 

[antares4141]

This is second hand information here cause it looks like health central took away all dr dean edells articles. Which the below website linked to in the references. So I can't vouch for it. But I've heard similar such things on his radio program. Things I heard probably weren't that inflammatory but I wouldn't put it past him:
http://art-bin.com/art/canaries_en.html
"The American radio doctor Edell is on to something similar as Wahren, when he says:
Take something like multiple chemical sensitivity. These people get outraged when you tell them it's all in their heads (and we've proven it over, and over, and over it's all in their heads) but they still don't want to believe it. They want to be sick. They almost enjoy being the center of attention. There's something that is psychological that "

It would be great to catalogue remarks like these and throw it back in there faces if a way to diagnose CFS is ever found. Not that any of these people are capable of guilt or shame.

 

[Little Bluestem]

When I first tried to see an infectious disease specialist, my former cardiologist gave me a referral. ...
I was stunned that I was blacklisted from a phone call and couldn't even make it through the door!

I saw another infectious disease doctor ...
He was mean and condescending and I left his office in tears.

At least you did not have to pay the first doctor for his mistreatment.