Death in Derby due to 'chronic fatigue syndrome and anorexia'

[Desdinova]

Once you have experienced what cachexia is, you can't forget it. It is a very scary thing to witness.

Agreed my Father died from melanoma, which came back several times before final making it from his skin to his lymph nodes and finally his blood. From their it went everywhere including his liver. That's why cachexia is a far cry from anorexia.

 

[Waverunner]

I find it disgusting that a society lets people purposely die and refuses to accept that CFS is a real disease. We put so much money into our inefficient European welfare states, we bailout every bankster and pay lots of taxpayer money to all these bureaucrats no one needs. I could throw up when I think about how many diseases could be cured by this money and how much science could be conducted for the good of all.

 

[ukxmrv]

State execution of a ME patient due to lack of proper treatment.

She could have been tube fed like others in the UK.

They starved her to death.

 

[ixchelkali]

I've watched people with cachexia, too. Science isn't sure what causes it, but it seems to be related to too many proinflamatory cytokines. The patient has little desire to eat (anorexia), but feeding with a feeding tube or otherwise adding calories doesn't stop the cachexia. They just aren't metabolizing what they eat and the wasting continues.

Don't be too quick to judge her caregivers. Forcing food into someone with cachexia usually does no good to halt the progression toward death, and simply makes the patient more miserable. I've had reason to research this. The only thing that seems to help is if you can reverse the underlying condition, whatever it is that's causing the tsunami of cytokines.

I think our anger is better directed against those who stand in the way of good biomedical research into this disease. There are too many of these deaths, and most of them aren't reported in the papers. Certainly not reported as being related to ME/CFS. We need to expunge the myth that ME/CFS doesn't kill. And we need research, so that no more parents have to watch helplessly as their child wastes away and dies.

 

[Esther12]

From what little I've seen, it seems like it's impossible to say what happened or why. Maybe we'll learn more in the future, but for now I'm just going to post my sympathies for this woman and her family.

 

[Vitalic]

If only she had been given emergency cognitive behavioral therapy, or emergency graded exercise therapy, maybe it would have saved her life.

Actually, joking aside, BSM advocates would most likely say this case highlights the need for more psychological interventions at an earlier stage, to prevent patients mistaken illness beliefs developing to such an extreme level.

 

[Calathea]

ixchelkali - The thing is, they said she was diagnosed with cachexia by the coroner. If someone is starving to death, they should be getting a diagnosis when the problem starts, not after they've been allowed to die. It could just be bad reporting, but it sounds as if something, somewhere, went very badly wrong. There is no indication that she was offered any methods of feeding other than food on a spoon.

For anyone who isn't used to UK measurements, I'm going to repeat what her weight was in other measurements: 44lb or 20kg. If she were 5'4, say, then her BMI was 7.6, and if she were 4'11 (my height) her BMI would have been 8.9. A BMI below 18.5 is underweight, a BMI below 17.5 is likely to lead to a diagnosis of anorexia, the WHO considers anything below 16 to be starvation, and apparently people tend to die when their BMI gets to 12.5 or so. This is mind-boggling. I'm wondering whether the diagnoses of anorexia and cachexia were applied simply because she got so unimaginably thin. What on earth is happening when a woman is allowed to starve to death before any doctor bothers to examine her?

 

[Dainty]

What an awful thing. Thanks for starting the thread.

What on earth is happening when a woman is allowed to starve to death before any doctor bothers to examine her?

According to the article she did have a doctor who saw her at home:

GP Dr Ruth Lenehan said admitting her to hospital was "not in her best interests" as her physical condition "deteriorated" when she was taken from her bed.

...

Dr Lenehan said she never saw Lois out of bed because she was too "frail and thin".

She said Lois did not allow her to visit frequently.

Asked about the last time she saw Lois four days before her death she said: "She appeared thinner than when I had seen her previously. I was able to communicate with her via hand gestures and writing. We discussed admitting her to hospital but she felt that would make her condition worse."

Dr Lenehan said she and Lois's team of carers had done all they could to help her.

 

[SilverbladeTE]

I find it disgusting that a society lets people purposely die and refuses to accept that CFS is a real disease. We put so much money into our inefficient European welfare states, we bailout every bankster and pay lots of taxpayer money to all these bureaucrats no one needs. I could throw up when I think about how many diseases could be cured by this money and how much science could be conducted for the good of all.

as i posted today, another bank was caught out in huge tax evasion scam
we've had two wars over compelte bullcrap leading to near a million deaths (note only a tiny % of the deaths were done by our forces, vast majority of carnage is entirely the locals doing against each other, but we destabilized the nations that triggered that carnage...for profit)
and so on and so forth throughout history
today though, there's no excuse for such, but still it goes on
From wars to letting people rot and die for no good reason

Be extremely subtle, even to the point of formlessness.
Be extremely mysterious, even to the point of soundlessness.
Thereby you can be the director of the opponent's fate

so let it be written
so let it be done....

Sigh.
Controlling the flow of information is paramount to our "Masters"...well, truth is always the first casualty in a war

ME is "inconvenient", for some reason, powerful folks don't want it to be heard, so it is not heard.
often, you will find it's only local or non-maisntream news outlets who publish such stories as this, unless they engage/shock someone of importance.

All in all
We're just bricks in the wall...

 

[Esther12]

I just read this blog post which suggests Lois could have suffered from undiagnosed EDS and displayed clear hypermobility in photos: http://benefitscroungingscum.blogspot.com/2012/02/rare-disease-day-ehlers-danlos-syndrome.html

I've got no idea whether that's likely to be true, and am normally wary of speculating about these sorts of cases, but it still seemed worth posting to the blog (which I've also read quite a few good posts on in the past).

 

[Cinders66]

I dont at all accept all that could be done was done.

It looks like they all thought hospital would have negative consequences (and yes it would have temporarily) - but don't mention the desperate need for safe, ME friendly inpatient facilities- and therefore essentially she was too ill to go into hospital for tube feeding? Don't all people with ME at that level feel they are too ill to cope with hospitals, most with severe ME do , that's why it's neglect that this group arent catered for.

Contrary to excuses of "nothing could be done", I see this as layers of neglect - the GP who thought she "looked a bit thinner" when she was actually 3 stone? The lack of available facilities to go safely so she opted for the "stay at home , starve and hope option"; the consultant who doesn't seem to realise that if she'd had a tube in she would have survived and did she have any expert medical care t ocare for her in this predicament anyway? ; the family who don't seem that involved; the charities who don't do anything to get severe ME proper medical care and facilities...

so everyone stays silent and allows a naf no blame verdict to cover up neglect and failure AFAIC.