My GP (PCP) wants advice to pass on to others

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 6, 2003.

  1. tansy

    tansy New Member

    I saw my GP on Wednesday. Asked her to take a leap of of faith with me regarding hypercoagulation and she responded very positively.

    Anyway she knows I'm well informed on ME/CFS and used to help run Action for ME some years back. We regularly exchange information and she's very supportive of the more established non orthodox approaches and open to suggestions on the others.

    We were discussing both our frustrations over lack of NHS facilities for ME/CFS patients in this area. I offered to put together some general info on diet etc for her to hand out to other patients, that these would not require a great deal of expense would make a difference to many: she jumped at that. I told her I would then go on to produce a few more info sheets on probiotics, supplements, and other therapeutic agents. She was delighted at that too.

    And so here is an opportunity to increase understanding of CFS and FM. It will encourage patients at that health centre to find their individual means of improving their health and symptoms. If these do make a noticeable difference this information will be passed onto other GPs and then perhaps a few of the local hospital specialists will take it on board too.

    One can but try.


    [This Message was Edited on 06/06/2003]
  2. Princessraye

    Princessraye New Member

    And your Dr. for her interest !
    I think working together is the best idea . It's great that you will also be helping others :)
  3. Applyn59

    Applyn59 New Member

    That's great. I am happy she was receptive
    and also that you are able to help others.

  4. MemoryLane

    MemoryLane Member

    Start with some of the patient brochures from here at this site. I understand they will send about 99 or so at a time.

    If you have Microsoft Word, there is a brochure template to use.

    How can we help - What would you like to do first?

  5. garyandkim

    garyandkim New Member

    They are free and you can order over and over. They are great and we hand them out every where plus, print outs of research like the MRI's that show FMS pain is greater abd shows difference during one. The guided gives this web site addy so others can order to and come. The doc can even get put on the Doctors guide if you or they request. It's up top here.

    Thanks, Kim and Gary
  6. kalina

    kalina New Member

    This is a wonderful thing you are doing. You have the power to help others with these DDs by giving them the information that could help them regain their lives.

    And I'm so glad to hear your doc is willing to look into the hypocoagulation issue, and hope you will find some answers. Please keep us posted!

  7. tansy

    tansy New Member

    Hi Lane,

    Thanks for reminding me about the info sheets, they're so much better than the UK ones. I have CFS but I mentioned FM and she seems to accept that as a genuine illness.

    My GP's particularly interested in the diet, water, salt, digestive enzymes, probiotics, etc, because they won't cost patients a lot of money and she agrees they do need info on these.

    Fortunately she recognises candida, leaky gut ++++.

    In terms of help, yes please, could do with some book recommendations. First I want to start with anything on high protein diets, blood type/ancestory diets, use of digestive enzymes (leaky gut & coagulation) etc.

    Also good web sites for sea salt and water +++.

    Don't want to swamp her with everything at first and after chatting to her this is the platform I will use to get the ball rolling.

    My brain can't deal with details and I'm getting a bit swamped by everything again. However, I do believe a little bit from each of us will make it more accurate and understandable.

    Aren't people on this board great.



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  8. tansy

    tansy New Member

    Thanks for your reply, have already ordered 99 and will get some help distributing them around the city I live in.

    It's not really appropiate to add my GP to list here since she only works on NHS, cannot accept new patients, she only works part time too. She's not even my official GP but in the practice I'm registered with you can see any of them. Her three other partners are useless; one recognises CFS but expects you to live with it and take antidepressants, the other two don't even recognise it.

    However, she is in a position to educate other GPs and I'm sure she will do so. Things need to change in the UK, it's theoretically happening at the top but it's going to take a long time before it all filters down. I'm not prepared to wait.

    Take care both of you.



    [This Message was Edited on 06/07/2003]
  9. garyandkim

    garyandkim New Member

    here in the States with so many specialists. Have only ment one that was a real jerk.

    Glad you ordered the huides. They are so great and you can even post them.

    You take good care, Kim
  10. tansy

    tansy New Member

    Thanks for your reply.

    I do believe that everyone has a right to all the available knowledge on these DDs, and what self help measures are really helping us. What they do with that knowledge in then up to them. Also if enough doctors see their patients improving more will start looking more into why they do.

    In theory everyone benefits. However, I was involved in all this many years ago and only minimal progress in the UK has been made.

    The most ironic part of this is that Dr Ramsay of the Royal Free Hospital in London defined this illness (as ME) over 50 years ago, and the UK in general is still very bad at accepting it let alone treating aspects of it. He suspected, as do a small number of other doctors, that it was caused by a mutating virus. With our knowledge now we can see he wasn't far off the mark, and still they haven't got it!


  11. sujay

    sujay New Member

    Way to go, girl! Your doctor is lucky to have you for a patient. Please keep us informed of your progress, and klet us know if there's anything else we can do to help!
  12. pam_d

    pam_d New Member

    You're in the UK----isn't that where they cloned Dolly the Sheep? Do you think you can clone this doctor of yours & send about 10,000 of her to the US?????

    Seriously, you are so fortunate to have a doctor who listens & cares!! And how good of you to put all the literature together to expand others' knowledge. Great idea!

  13. JHG

    JHG New Member

    where do you go to get brochures on Fibro. Thanks, jhg
  14. JHG

    JHG New Member

    where do you go to get brochures on Fibro. Thanks, jhg
  15. tansy

    tansy New Member

    just go to the top of the page and the first post is -
    "A patient's guide to CFS and FM", click on there and away you go.


  16. tansy

    tansy New Member

    Hi pam

    Yes dolly the sheep was cloned here. I think many more GPs like mine would make a difference, though in the UK GPs that accept CFS are much better than most consultants. I believe this is because they have not narrowed their field of expertise down too far and these DDs effect our whole bodies let alone our poor minds.

    My GP accepts her knowledge on CFS is limited but that she and I seem to be the only ones who can sort most of the problems out. She did try some referrals but they were rejected, no direct funding. But she has respect for me as a person and everything is discussed, sometimes she looks genuinely shocked when I tell of some of my physical problems. She seem to be able to understand things from my perspective too which is fantastic.