to pinkquartz, satin, slowgirl, nell-uk

Discussion in 'Fibromyalgia Main Forum' started by sb439, Jun 4, 2003.

  1. sb439

    sb439 New Member

    I finally looked up the good doctor list here on the board, and as I was at it, also looked at 'UK', there is only one doctor there. I wonder whether we should suggest our Dr H. for that list, just wondered whether you think that may possibly be doing him a disfavour?
    Thanks,
    love,
    Susanne

    Barb - you look sooo cute on the photograph (and unlike Nell I was entirely taken in by your blond as being natural

    Nell - very nice haircut!!

    PS: hope very much that those of you who had an appointment with Dr H. today had a successful day, and no side effects of the infusions.[This Message was Edited on 06/04/2003]
  2. Sindy-Uk

    Sindy-Uk New Member

    Well I was quite impressed today. Dr H has got a nurse to do the infusions. Before he used to be in and out of his office all the time, changing the bags every 20 minutes or so. The other patients having infusions last time were saying how disorganised it was and he really should employ a nurse to do all the medical bits. She seems quite keen to learn everything. I finished my infusion at 2.30 and got home at 4.30. Apart from the tiredness, I dont have any side effects yet, keeping my fingers crossed. I am gald to say, hopefully this was my last infusion.
    Barb- It was lovely meeting you. You look very good.I didn't realize you weren't a natural blond. I hope you are not having any side effects with the dioxychlor.
    Anyway, must rest now.

    Love
    Satin
  3. nell-UK

    nell-UK New Member

    Hi Susanne.....

    There is a bit of a mystery about this as I have e-mailed his name many times (at least 10) sometimes I have received a reply telling me his name would go up in the next few days, other times I heard nothing, it was bugging me that it wasn't done but I have no idea why, maybe they are just extremely inefficient but yes I do think he should be on there, very much so, however after over a year of trying to get his name there I am fed-up! Maybe if someone else e-mails they might listen to them!!

    I don't know if it would be doing him a disfavour, after all it is only recommending him and if it overly adds to his patient list, he'll just have to have a waiting list.

    Glad you liked the haircut!!

    Love Nell x

  4. sb439

    sb439 New Member

    I think Barb's last e-mail about that other doctor has convinced me, too. What a sh*&head. This stuff about CFIDS being about psychological problems also gets me terribly annoyed each time I read it, and yes, he's dumb, dumb, dumb in the bargain (the theory that if more than two people in a family have it, it must be dysfunctional family is ridiculous, if it weren't so sad that a MD is allowed to say this out loud. According to that theory, I bet measles are also a sign of family dysfunction (my sister, brother, and I all three had it), let alone haemophiliacs, hello, doctor, tock, tock, tock, ever heard of Darwin, or know how to spell the word 'contageous'?

    OK, enough of a rant, Barb, you see I'm very much like you in that respect ... :)

    So I suggest we all e-mail in (perhaps once more, Nell?, although, I sure understand your frustration!!), and see whether that makes a difference. I'll also ask Dr. H. next time I talk to him whether he minds being on that list, so that we get that point sorted.

    love to all,
    Susanne
  5. nell-UK

    nell-UK New Member

    Spacee...

    Hi, nice to meet you, I think you're thinking of Notting Hill which is in London, I live in Nottingham (Robin Hood, Sherwood forest and all that!) which is in the centre of the UK but I love that film also ;-) My experience with Ampligen was good and bad, good in that it got me much improved and out of bed for the first time in years but the side effects were pretty severe and it was very expensive but I know I wouldn't be where I am today without it so it was worth it for me. I do think it should be made available to everyone as I'm sure many people would benefit, I have to be quite careful about talking about my Ampligen experience these days as I have been attacked on a couple of boards, not that I care but it does seem to get people very upset and then they get all political so I tend not to say much, but if there's anything else you want to ask me, please do, I've never been attacked on this board but if anyone starts they can take a hike ;-)

    Susanne and Barb...

    I am struggling very much at the mo with a cold so am v.grumpy (can you tell, lol)...but I will e-mail again, of course I will, I just felt like I was going abit mad or something, I also wondered though if Dr H didn't actually want his name up there as to why they kept ignoring me. I think people should know about him though, they can then make their own decisions about going. As for that other git on there, oh don't even get me started ;-)

    Barb, I am sooooo pleased you had your first infusion and you are not too bad, excellent news, will keep my fingers crossed for you that you don't get too many side effects and that it actually helps.

    Love Nell
  6. tansy

    tansy New Member

    Hi Barb

    Years ago I was massively involved in a national ME/CFS patient ogranisation. We used to ask doctors if they minded being put on a list. Some refused because they didn't want to get swamped, others felt they could not actually help their ME/CFS patients so would rather not have more patients for whom the could do nothing.

    Others doctors, were much happier to do this. Many had substantial private practices. Some of these were really excellent, others had a poor understanding of ME/CFS and clearly money was a major motivation for them.

    Recommended doctors lists are provided for patients not doctors. So if someone has GENUINELY helped a lot of patients they go on the list. If a doctor on the list proves to be dodgy their name should be removed.

    Not surprised about Dr David Smith, he was going that way years ago; clearly he doesn't keep himself up to date with research.

    Just had to put my two penneth in.

    Cheers

    Tansy
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  7. tansy

    tansy New Member

    Hi Barb

    I would not advise anyone with ME/CFS to see David Smith. He was once a medical advisor to the ME Association, did make some good contributions initially but then was clearly influenced by the somatisisation and similar theories.

    Despite all the reasearch and info from researchers and patients he is one of a group of doctors who only bow to this ie find another explanation and carry on as before. I believe that this is down to their egos. They have invested in these theories to further their professional status. To accept they got it wrong is not possible for them, so who do you think have the personality "disorders"?

    This is why I get so angry at them, I think the majority of us have our lives, priorities, and beliefs in more order than these doctors. What's more they know the hardship and pain they cause, they've been told often enough but still they go on.

    Oh dear venting again.

    I got involved in Action for ME when it went from a small info source run by Sue Finlay and began it's exciting progression to a true national patients' organisation. We concentrated on getting all available info to patients and providing info on self help measures that the orthodox doctors did not believe in or like. We were a real campaigning force challenging misconceptions, educating, and speaking for the patients rather than for the doctors.

    I was on the council of management, executive too for a while, editing panel of their journal "Interaction" and numerous working parties. We were the scurge of doctors who would not take ME/CFS seriously.

    I loved it.

    Cheers

    Tansy

    ps Did you see my post yesterday? The ME Association have sacked Dr Charles Shepherd
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  8. sb439

    sb439 New Member

    Hi Barb, so glad you're doing OK after the infusion :)
    (I find it exciting the two of you (Satin and Barb) actually met at Dr Hyams.)

    As to the good doctor list, no, I thought let's just suggest him now. My suggestion to talking to him was because Nell wondered whether he may have been consulted and didn't want to be on, BECAUSE OF THAT it didn't work. So *IF* again it doesn't work, I would talk to him (or tell him anyhow). As I am running low on money, I will only talk to him in a few months again, I guess ...

    love,
    Susanne
    PS: ok, I've e-mailed them[This Message was Edited on 06/06/2003]