Caution with posting drs names and treatments...

[barbc56]

Geese, the standard meme of the brave maverick, fighting the good fight despite general consensus, complete with "little Timmy" aka Tiny Tim, who is cured and can throw away his crutches To me it sounds like PR nonsense. The true story is usually a bit more complicated than that.

I can't say it better than the late Carl Sagan.

But the fact that some geniuses were laughed at does not imply that all who are laughed at are geniuses. They laughed at Columbus, they laughed at Fulton, they laughed at the Wright brothers. But they also laughed at Bozo the Clown.

Barb

 

[ukxmrv]

I don't think that this is a problem we need to consider unless there is any evidence that there is a real problem.
We do have actual cases of the UK GMC santioning doctors here but internet discussions are not the issue.
if someone sees a post that they think would cause a genuine problem then they should contact a moderator as always.
A blanket warning seems unwarrented.

 

[Little Bluestem]

I've been careful about that myself and have personally contacted members who wanted info about a doctor so as not to do it publicly for the reasons you express.

In the past, I have wondered why a person would offer to give more details of their treatment in a private conversation. I thought the information could be helpful to other current or future members. Now I understand.

 

[WillowJ]

In the past, I have wondered why a person would offer to give more details of their treatment in a private conversation. I thought the information could be helpful to other current or future members. Now I understand.

I think there are other reasons for that as well. Depending on people's experiences and personality they have different levels of comfort and different reasons for what they do.

Not sure if this is because of being an introvert or being shy, because I am both, but I just don't feel as comfortable in a large group setting as a smaller setting. Posting my details on the internet is intimidating to me.

There might also be some people who might feel their details could be personally identifying (or that someone knows or could guess their username), and want to deny or hamper access of their personal details to someone, whether an online person(a) or someone from the brick-and-mortar world.

 

[acrosstheveil]

this is happening in the USA. many doctors have lost their license and are being sued for treating lyme patients.

 

[ukxmrv]

this is happening in the USA. many doctors have lost their license and are being sued for treating lyme patients.

Is there any evidence that this is happening because of online comments in this group?

 

[Min]

My own wonderful specialist was hauled before the GMC and prevented from working with Lyme and M.E. patients as a result of being named by patients on the internet. This has left many if us with no hope of ever receving effective treatment.

This is heartbreaking when the ammoral doctors who abuse us with GET,CBT and blatant lies about harassment and death threats are allowed to continue torturing us and one is even knighted.

 

[ukxmrv]

My own wonderful specialist was hauled before the GMC and prevented from working with Lyme and M.E. patients as a result of being named by patients on the internet. This has left many if us with no hope of ever receving effective treatment.

This is heartbreaking when the ammoral doctors who abuse us with GET,CBT and blatant lies about harassment and death threats are allowed to continue torturing us and one is even knighted.

Did you actually question this doctor Min and they confirmed that this was the cause? Was any evidence presented at their hearings around this? Can you please provide a link.

I was in touch with 2 doctors hauled in front of the GMC and neither of them blamed their patients talking on the internet. There may be some I missed though of course and that's terrible.

 

[Sushi]

Poughkeepsie Journal Editorial Board 9:36 a.m. EST December 20, 2014

Governor makes right choice on Lyme bill

At long last, relief for long-suffering Lyme patients is on the way, thanks to the actions of various state officials — and an unyielding, righteous push from the public.

It never should have taken this long. But Gov. Andrew Cuomo has righted a long-standing injustice that failed to protect doctors who want to provide long-term treatment for Lyme disease other tick-borne illnesses....

The measure will enable physicians to prescribe long-term antibiotic therapy to a patient with symptoms of chronic Lyme disease without fear of retribution from government regulators. (my bolding)

 

[acrosstheveil]

Is there any evidence that this is happening because of online comments in this group?

no. i was seeing a LLMD a few years ago that was on trial many times and had to change states where he practices in..etc. i don't know all the details but he wrote a book about it if you are interested.

 

[Mya Symons]

Poughkeepsie Journal Editorial Board 9:36 a.m. EST December 20, 2014

This is awesome. Hopefully, other states will follow and do the same.

 

[ukxmrv]

no. i was seeing a LLMD a few years ago that was on trial many times and had to change states where he practices in..etc. i don't know all the details but he wrote a book about it if you are interested.

Would be great if you could post any relevant parts here - specifically about how patients talking on internet forums was a big factor (if it was?)

 

[maryb]

Every doctor in the UK prescribing more than 2/3 weeks of doxycycline for Lyme is going against NHS guidelines, if I were one of them I wouldn't want any of my patients posting a day by day account of treatment I was prescribing,for various reasons. What is between a doctor and patient is confidential after all.
I have been told privately that one top specialist does not want their patients doing this.
I don't think its about anything other than respect for the doctors really.

 

[duncan]

The NY Lyme bill is a huge victory. There is much weeping in the back corridors of the Old Lyme Guard, I expect.

If we need to legislate Science into medicine, and politics and profits out of it, then so be it. It may take a little longer, but if we have to do it State by State,and Country by Country, I will savor each win all the more.

 

[acrosstheveil]

Would be great if you could post any relevant parts here - specifically about how patients talking on internet forums was a big factor (if it was?)

it wasn't due to posting on internet forums as far as i know. i don't have the book so I can't post anything on it. but the book is called Prime Example by Dr. Warren Levin. it's mainly about doctors being prosecuted for using alternative treatments.

 

[ukxmrv]

Every doctor in the UK prescribing more than 2/3 weeks of doxycycline for Lyme is going against NHS guidelines, if I were one of them I wouldn't want any of my patients posting a day by day account of treatment I was prescribing,for various reasons. What is between a doctor and patient is confidential after all.
I have been told privately that one top specialist does not want their patients doing this.
I don't think its about anything other than respect for the doctors really.

It's not a first hand account though so really a rumour? (the top specialist) I've been getting more than 1 month of Doxycycline prescribed by my NHS ENT consultant for sinusitis which my GP tells me is against normal practise. He's not told me to be quiet about it. I've had NHS prescribe against the NICE Guideline for CFS/ME and not asked to be quiet.

I do appreciate that Lyme is different.

There haven't been any cases of UK doctors getting into trouble over internet postings for ME, CFS have there? Have there been any cases of Lyme doctors in the UK getting into trouble over internet postings?

I guess the current system is working then.