Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Caution with posting drs names and treatments...

Discussion in 'ME/CFS Doctors' started by Helen, Dec 10, 2014.

  1. Helen

    Helen Senior Member

    Messages:
    2,067
    Likes:
    3,187
    Hi all,

    I am not starting this thread to support some kind of hiding "illegal" treatments, but as there isn´t consensus about the effective treatments for e.g. Lyme disease and co-infections I think it could be a good idea to be cautious with what we share in the forum as it easily is found by googling a doctors name. This is about all appointments we have, not only with Lyme doctors.

    In my country we recently lost a Lyme doctor with good results, due to patients posting his name and details from treatments. The medical authorities then visited his clinic and as he treats differently than with (only) 2 weeks of doxycycline for all Lyme patients ( that is standard treatment and is supposed to cure all Lyme here,) he doesn´t want to challenge his right to work as a doctor in the future and therefore stopped seeing Lyme patients.

    I hope that I have been able to express this clearly. Be sure I don´t want to criticize any member of the forum. I am very much interested myself in taking part of others consultations, and would gladly share my own in a way that is safe for my doctor abroad.

    Best,
    Helen
     
    Last edited: Dec 10, 2014
    SOC, taniaaust1, justy and 11 others like this.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,324
    Likes:
    4,359
    London
    are you positive that this was caused by people posting about a doctor online? i heard a similar thing about a UK doctor but when the case was heard it turned out to be for a different reason and nothing to do with online comments.

    can you provide a link to this particular case please?
     
  3. helen1

    helen1 Senior Member

    Messages:
    972
    Likes:
    1,363
    Canada
    I think you make a good point, @Helen. 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.

    I've also noticed several times that when a doctor's name is in a thread title in a critical way the posting member has been asked to edit it by other members.
     
    SDSue, Sushi and Helen like this.
  4. Helen

    Helen Senior Member

    Messages:
    2,067
    Likes:
    3,187
    Thank you @helen1 . I was a bit worried that my point wasn´t clear, but from your post I know it was .

    @ukxmrv. How could I or anyone outside the "FDA" know for sure. I´m sorry but I will not send any link to the case. My point was like helen1 understood it, so a link to the case could do more harm.
     
    MeSci and ukxmrv like this.
  5. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,331
    Likes:
    21,477
    Albuquerque
    Thanks, Helen,

    I have heard of this problem too--both in the United States (with LLMDs) and in Europe with doctors who choose to treat us medically rather than psychologically. In some countries the health authorities have used Google to discover whether a doctor is treating according the the "accepted" psychological guidelines or if he/she is treating patients with ME/CFS medically--and thus outside that country's guidlines. This has lead to clinics being closed down. We have so few resources to help us that we don't want to do anything that might jeopardize them.

    This is a good point to remember,
    Sushi
     
    Bessie, justy, ukxmrv and 4 others like this.
  6. Helen

    Helen Senior Member

    Messages:
    2,067
    Likes:
    3,187
    Yes, and I think we can use our creativity to get around posting the full or correct drs names connected to treatments. Could be a new game ;).
     
    Bessie, maryb and Sushi like this.
  7. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    If clinics are being closed due to patients posting their experiences on forums, then that is sad. Where is the proof of this?
     
    ukxmrv, Valentijn and jeff_w like this.
  8. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,996
    Midwest USA
    I think that the "authorities" have plenty of ways to witchhunt doctors with or without forums. I really don't think it makes much difference. It's not like a random Internet post could be used as any sort of real evidence.

    Ultimately, it is the patients that lose out if people are afraid to share their positive and negative experiences with doctors honestly (if anonymously!) on forums.
     
    jeff_w likes this.
  9. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    Members could just use initials. If we can't share experiences, then where are we?
     
    Bessie, Hanna, taniaaust1 and 3 others like this.
  10. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,996
    Midwest USA
    But what if I'm thinking of trying a new doctor and using the search function to read about other members' experiences?

    Creativity is going to make finding posts very difficult. The search doesn't even recognize short, initial queries.
     
    Helen likes this.
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,843
    WA, USA
    My guess is that if they post their protocol publicly on their own webpage, it's probably ok to post here? If they do not, one might be more careful?
     
  12. Helen

    Helen Senior Member

    Messages:
    2,067
    Likes:
    3,187
    @Ema, Yes that might be a problem, but a "only for members" thread with the actual doctors name included would be possible to find by reading the list of threads. But as you say it will be more difficult to find information - which will be both for us and for opponents to doctors.

    @WillowJ , I agree with you. Just a bit of carefulness and reflection before posting.
     
  13. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,324
    Likes:
    4,359
    London
    we also want to avoid scaremongering and stop patients being fearful of talking. if there are problems in particular areas and countries maybe posters here who say that they have genuine unformation should at least share that. Is it really going to make it worse here if common knowledge?

    or are these rumours or by now things that are comin knowledge and unlikely to be further harmed by patient discussions on this forum. Who is making this decision - the doctor, the clinics or are some patients deciding it for them?

    I was also told the same thing about an Australian Lyme doctor but he had been in newspapers talking about his work so it had nothing to do with patients on the internet.

    The same thing about a Uk doctor but when someone actually asked him he said it wasn't true.

    If it is Lyme only then say it is Lyme as an example. or if it is only in a particular country?

    Has anyone here been told by a specific doctor clinic that they cannot discus this?

    if someone has some actual information that's good to warn people about but no rumours like the ones I have heard previously. Then it's censorship or trying to get all the infirmation into particular private forums under rules.
     
    Last edited: Dec 11, 2014
    Valentijn likes this.
  14. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,331
    Likes:
    21,477
    Albuquerque
    That sounds like a good guideline Willow. Perhaps, if in doubt, we could ask our doctors if they have objections to being named on public forums and us posting the details of the treatment they have prescribed.

    Sushi
     
    Little Bluestem, WillowJ and Helen like this.
  15. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    With regard to Lyme this particular problem was mentioned in the book by Canadian Author (and therefore with regard to a Canadian medical practitioner). The book is ' Rain on a distant roof ' by Vanessa Farnsworth.
    When she couldn't get any treatment while extremely ill she went "underground" and found a doctor who believed her and helped her. The Dr was later bullied by medical authorities to cease and desist and therefore no longer offers treatment. I don't know that the problem was being found on the internet (it might have been) but even if it was something else the problem still remains that the internet provides an avenue of identification.

    I don't find this at all surprising that the medical bureaucracy penalises Dr's who treat off label. They are monitored--particularly easy to do in the age of internet connectivity.

    I think Helen brings up a point that should be considered. After all if it does happen then people seeking treatment will also not be well served if the Dr can no longer practice. Since people generally seek treatment locally first then it just means that we have an opportunity to explore new ways of communicating locally as a group that would be advantageous to us and prevent this sort of thing from happening and perhaps even provide other benefits.
     
    Sushi and Helen like this.
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,896
    Likes:
    12,702
    Sth Australia
    Isnt Dr C's patients under instruction not to talk about their treatment on general online forums? There also another who's patients have their own forum and cant talk about the treatment publically (I forget now the drs name).

    Many of the doctors who loose their licences due to giving patients the so called "experimental treatments" rather then the standard ones, have actually been dobbed in by other doctors the patients have seen and told.

    There was a dr who lost his licence here in Australia for not doing the 'standard treatment" I cant remember now but it may of been for lyme treatment rather then for ME/CFS.
     
    Last edited: Dec 12, 2014
  17. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    What province did this happen in? What medical authorities? All of this seems to be a lot of scaremongering. What's the point of talking about treatments if you can't mention who you are being treated by?
     
    ukxmrv likes this.
  18. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,331
    Likes:
    21,477
    Albuquerque
    We frequently read accounts on Lyme sites of LLMDs being harassed. Here is one (I just pulled this up on Google, so can't vouch for this one in particular). I could probably find other accounts as it is something that is often reported (with specifics).

     
  19. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    The author is from the Kootenays in BC. She was treated by a Dr in BC (I'm not sure where specifically).
    All of the details are in the book which I acquired through the Toronto Public Library.
     
  20. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    Canadian provinces don't historically have a history of sanctioning doctors. If a test isn't covered by the provincial health insurance, one can choose to pay for it privately. I know in Ontario Doctors d0n't lose their licences easily.

    As far as I am concerned, a lot of this is just heresay.
     

See more popular forum discussions.

Share This Page