Medical Accountability?

[Little Bluestem]

In the Northern regions of the United States and Europe, vitamin D deficiency is rampant. In some cities in the United States 70% of the population in the winter might have vitamin D deficiency (such as Boston). ... Nearly 70% of patients with fibromyalgia have vitamin D deficiency, i.e. misdiagnosed.

Given that he has just said that up to 70% of the U.S. population might have vitamin D deficiency, how does it follow that anyone with vitamin D deficiency cannot have fibromyalgia?

I do think he has a valid point about lack of rigor in testing patients with CFS.

 

[Firestormm]

Yesterday after a MRI, I got my results, I dont have dementia! Yah!!!

Although I advised this Dr I was diagnosed with M.E. in November 2012 using the new ICC for M.E. He still wrote a report to my GP advising my 'fatigue' (I dont have fatigue issues as such) and suggested I be treated with GET, CBT and anti-depressants!

I advised him his treatment is 20 years outdated and can cause further disablement to suffers if undertaken and that M.E. in not a mental health illness and I have 2 reports from 2008 to current that state I dont have any signs of mental health unwellness. Although I gave him a 'folder' on a range of M.E. information, he was not interested.

Sometimes I think it is time to start writing to the AMA and report this medical abuse and ignorance, how do other M.E. people in Australia access and receive appropriate medical treatment? or are some states worse than others?

Might I ask if the MRI was to rule out Dementia or was in some other way related to perhaps your ME? In other words why were you referred in the first place and what was the result? Thank-you

Also, who diagnosed you with the ICC-ME out of interest, and if you are not happy with the prescribed 'treatments' being suggested to your GP by this neurologist (?); might you not refer back to the doctor who initially diagnosed you?

If Australia has determined that ME and/or CFS are one in the same and the recommended 'treatments' are indeed - as in the UK and with the NICE Guidelines - GET, CBT and anti-depressants (along with activity management and other management strategies); I am not sure how you might complain at this stage.

I mean the neurologist (?) is presumably following national and/or state guidelines. If there are no such guidelines in Australia (or even if there are) you as a patient have the right to refuse.

Personally, I would go back to the doctor who diagnosed you with the ICC-ME (not heard of that happening very much) and see what he/she advises. You might find their recommendations more amenable.

 

[alex3619]

The old Australian guidelines for CFS do recommend CBT and GET iirc, but are not enforced, although doctors may be investigated (and fined) if they do not and the HIC wants to investigate them (Health Insurance Commission).

It is time and past time for doctors prescribing these things to be reported, and not just to the AMA. There is now sufficient evidence to take a stand.

ME is typically not recognized in Australia. If you say ME here its often "I don't believe in CFS" or "whats that?".

Where reporting of doctors should occur is if they prescribe CBT (unless its strictly for something like stress management) or GET, if a patient qualifies for a diagnosis of ME. This should also occur in the UK in my opinion. If the GMC got 100,000 formal complaints a year (every year) from ME patients, things would change. They would be forced to stop ignoring the science.

 

[SanDiego#1]

The old Australian guidelines for CFS do recommend CBT and GET iirc, but are not enforced, although doctors may be investigated (and fined) if they do not and the HIC wants to investigate them (Health Insurance Commission).

It is time and past time for doctors prescribing these things to be reported, and not just to the AMA. There is now sufficient evidence to take a stand.

ME is typically not recognized in Australia. If you say ME here its often "I don't believe in CFS" or "whats that?".

Where reporting of doctors should occur is if they prescribe CBT (unless its strictly for something like stress management) or GET, if a patient qualifies for a diagnosis of ME. This should also occur in the UK in my opinion. If the GMC got 100,000 formal complaints a year (every year) from ME patients, things would change. They would be forced to stop ignoring the science.

Don't think the UK has it together either, when we have all the patients on this site asking for referrals to someone in UK and Australia?????Just have to keep AND complaining. Documentation is very important. However-Some are too sick to do anything.If most bloggers will see- we have MANY people asking for help from Australia and UK and many over here going to Brussels. If they are too sick to go to some one here-how are they getting to Brussels? We do have good Dr. here-it is just finding the right ones.To me West Coast has the best choices. I know they are going to say the ones in Brussels are cheaper-but at what price do we pay having to go that far?

San Diego #1

San Diego #1

SanDiego #1

 

[alex3619]

I am aware of more than a few patients travelling out of the UK for treatment if they can manage it, primarily to Belgium. There is a huge lack of quality medical care for ME here in Australia too. I am also aware than many/most of us could not handle lodging formal complaints. The US is also one of the favoured destinations ... there are probably more high quality ME docs there than anywhere. Indeed there are Canadian patients who cross the border for medical care, or at least they discuss doing it ... cost can be a huge hurdle, as can limited capacity to travel.

There are three things that I think are heavily against us in advocacy. The first is we are mostly too sick, and most of those that have enough health to possibly advocate are spending all of it on trying to manage to have a life. Then there is the misinformation and lack of awareness. When people are ill informed they have no idea that advocacy is needed. Third there is deliberate pressure against advocacy. Advocates are "militants/fanatics/crazy/bad-people" ... obviously , and anyone using the internet for advice will make things worse for themselves. These last claims are nearly all arising out of adherents of the BPS movement, which is looking not too different from a poltiical movement these days. These last claims will unravel over time as patients are increasingly aware of the issues, and that there is hope.

 

[Goodness to M.E.]

Might I ask if the MRI was to rule out Dementia or was in some other way related to perhaps your ME? In other words why were you referred in the first place and what was the result? Thank-you

Also, who diagnosed you with the ICC-ME out of interest, and if you are not happy with the prescribed 'treatments' being suggested to your GP by this neurologist (?); might you not refer back to the doctor who initially diagnosed you?

If Australia has determined that ME and/or CFS are one in the same and the recommended 'treatments' are indeed - as in the UK and with the NICE Guidelines - GET, CBT and anti-depressants (along with activity management and other management strategies); I am not sure how you might complain at this stage.

I mean the neurologist (?) is presumably following national and/or state guidelines. If there are no such guidelines in Australia (or even if there are) you as a patient have the right to refuse.

Personally, I would go back to the doctor who diagnosed you with the ICC-ME (not heard of that happening very much) and see what he/she advises. You might find their recommendations more amenable.

Hi Firestormm,
The MRI was the only option to test for Neurological issues with M.E. through a Memory Clinic. Although I gave the MRI clinic the new M.E. Primer and other info re: MRI's for M.E. they had never heard of the dis-ease and had no-one skilled in the area to read the MRI for M.E. so the report focused on Dementia and of course I did not have it, so the doctor recommended GET, CBT and anti-deppressants.......as treatment

 

[Ema]

Good Post- However from 2007. Many changes on treatment. Just few Dr to treat us. Will not recognized new treatments or new diag without $15,000.00 in hand. First thing my Environmental Dr. did -contrary to CFIDS Dr. was to ck my thyroid and adrenals. They neither one were working. Put me on supplements for both and I am slowly getting better. These were compound. Environmental Dr. is Susan Tanner MD in Atlanta,Ga.. Takes insurance and files it. Also on CPAC machine.

Best,

San Diego #1

Small world SanDiego#1...Dr Tanner was my first doctor.

Ema

 

[Ema]

The posts on a starting point for testing have been moved to their own thread located here:

http://forums.phoenixrising.me/index.php?threads/a-great-starting-point-for-m-e-tests.24583/page-2

in order to keep this thread on the topic of Medical Accountability.

Ema

 

[SanDiego#1]

Small world SanDiego#1...Dr Tanner was my first doctor.

Ema

EMA-
Love Dr. Tanner. She has a new office on Roswell rd. She has all my tests from CFIDS Dr. and nothing she has done has made me worse. In fact her Hydroxy B-12 is better than CFID Dr. and about $80.00 cheaper. Compounded.
She e-mails me right back free-if I am having a problem. Can't ask for anyone better than that.Also has Signal Cell formula that is helping she has devised herself.
Research does nothing unless you know how to use it to the benefit of your patient. When a Dr. uses it to further his own interest or to prove he is RIGHT-I am GONE!!!!! Love the lab picture. I have a Black Lab female.
Aren't they wonderful dogs?? If you want to write me PC-that is fine.

San Diego #1