Independent: Father attempted suicide and family almost lost home after GP missed common genetic condition for six years

https://www.independent.co.uk/news/...er-genetic-condition-peter-king-a8814946.html

 

One of the many ways this entire ideology is morally and intellectually bankrupt. It's harming completely unrelated people.

And, ugh, "falling asleep". That's what you get when you redefine an entire disease around a vague term that can be used in many different ways.

How many more of those are there? How many deaths? Lives ruined? Ridiculous.

This should really be highlighted in the NICE committee proceedings. To create collateral damage is definitely not something clinical guidelines should accept.

 

If he had been a woman of child-bearing age, perhaps the doc would have run the full iron-ferritin tests and made the diagnosis. Still, a dimwit of a clinician, what a lack of caring.

 

I'm sure there's many in the ME/CFS bin that's been misdiagnosed - not the fault of the patient.

The lack of talent and unaccountability circus seems to be moving on to 'MUS' and patients may need to force the issue and perhaps not be quite so deferential.

 

It appears more may be overlooked in medical training than appropriate education about ME.

This poor fellow was punted into the ignore bin. Appalling that iron test results even flagged this problem as a potential, and nothing was done.

As @duncan said on another thread, we have to be our own advocates. Even then, we miss stuff ourselves.

Health professionals deride the public for turning to "Dr. Google", but really what do we have when we have physicians like this?

How frustrating for the haemochromatosis society to know there are citizens misdiagnosed who actually have this disease. A disease that causes damage. Good they are finally able to work with NICE and the RC on this.

I don't know what the outcome of complaints is in the UK. What I've seen is that patient complaints are ignored. It's only when other practitioners get involved that something may be done.

 

It appears there may be many, many GPs in urgent need of retraining.

Most of these should probably be retrained to fill positions where human interaction is not required, as this appears not to be a skill some possess.

People hate stepping in dog products, they also appear to resent having to carry bags, or being hassled by council employees and made to pay a fine.

Surely even a GP could be trained to follow dogs, scoop as needed, and then bag and dispose of said dog products?

A valuable public service worthy of their skills and ability.

In my life I've been registered and seen about a dozen GP's. I've only ever met one that I, as a patient, would consider to be any good at their job.

 

Especially given ...

 

Is he a victim of the "do not test" mantra of official policy?

 

@Diane O'Leary I thought this thread/article might be of interest to you.

 

I posted this link from ME Research UK on an earlier thread; misdiagnosis involving ME:

http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

Two scientific papers noted in this link regarding misattribution of ME to 40% of patients in study #1, and 54% of patients in study #2.

ME Research UK also receives direct contact from about 400 people/year who first diagnosed with ME, have been re-diagnosed with other diseases such as: "Addison's, MS, sleep apnoea, primary mitochondrial disease, primary liver disease, and paranoid schizophrenia."

One can assume these people do not receive treatment until re-diagnosed.

ME Research UK calls ME "a convenient lay-by for clinically complex cases that don't fit into any category."

We can add haemochromatosis to this list.

 

I’m not sure if it’s too rare to be relevant but maybe they could add leukodystrophy/leukoencephalopathy as it’s also sometimes an MS mimick too
They show up on mri but I wonder if there are any that don’t