1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

H1N1 Flu antivirals and the uk guidelines help needed.

Discussion in 'General Treatment' started by justy, Dec 17, 2010.

  1. justy

    justy Senior Member

    Messages:
    2,730
    Likes:
    3,050
    U.K
    Hi all, i have been feeling unwell with flu for a couple of days that matches H1N1 (my 7 year old daughter is ill also)
    I am in Wales and last year antivirals where advised for anyone high risk.
    I have read the Welsh Assembly government guidelines from last year about treatment but cant find anything up to date.
    I rang my doctor yesterday to ask if it would be useful to have some and he said that i was not considered high risk as i am not immunocompromised like people with cancer or diabetes. He has said this to me before many times and it is making me really upset and stressed.
    According to the U.K guidelines i am high risk in 3 groups:
    I have a chronic neurological disorder (diagnosed M.E)
    i have a chronic lung condition (asthma and a fibrotic band in my lung)
    I have been treated for asthma in the last 3 years (2 courses of oral steroids and 8 months of antibiotics for pneumonia and pleurisy. Also extremely high doses of inhaled steroids for over 2 years which ruined my health)

    i am more or less housebound and my functioning is considered moderate sometimes more severe.
    Does anyone know anything about the situation in the u.k? I was going to ring the LHB in my area but i get really stressed and loads of adrenaline every time i try to do it (this has become a bit of a problem recently)

    I am not sure that i do have this type of flu, but the point is now that what if i did? how can i get them to take me more seriously (my doc originally diagnosed me with anxiety and depression and i have not been able to shake that label off!)
     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,724
    Likes:
    8,014
    UK
    Hi Justy - sorry you're having such an upsetting time with this. Your doctor might dismiss your ME/CFS diagnosis but having those other two lung-related official high risk factors in the guidelines should have got you the test.

    I'm not sure whether in your conversation with your doctor yesterday you mentioned these two factors - I wonder if you somehow ended up in one of those conversations where you argue about the nature of ME and you're so stressed that you forget to mention the other stuff. If so, would it be worth phoning him again and saying that you've been looking on the web and see that your lung conditions place you in the high risk category and so you feel you should get the drug?

    Not sure what else to suggest, otherwise - he sounds useless. Is there another doctor in the practice that you could deal with instead? One way of accessing them directly is to call the out of hours service - you'll get the duty doctor (who won't be him, hopefully!) and you could just say that you're very concerned about your illness, think it's flu and have seen on the NHS site that you're in a high risk category because of your lung conditions and take it from there.

    Totally understand how stressful this kind of conversation can be. Is it possible for someone to phone on your behalf?
     
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Is there a shortage of medicine? Why can't you get some by just having the flu? I do hope you feel better soon.
     
  4. justy

    justy Senior Member

    Messages:
    2,730
    Likes:
    3,050
    U.K
    thanks for the replies. i did remind the doctor about my lung problems and didnt discuss the M.E with him at all as i have had enough rows with him!
    I hav an appointment booked for the end of january to see the last dr in the practice that i havent yet tried to see if i can get him to take me a bit more seriously. I have decided to be honest with him and jst say that i feel let down by the practice and that i have been given no support at all - either for the M.E or for other problems i have.

    i like the idea of calling out of hours if i feel worse, the only problem here is that they make you go into the clinic to see them and our nearest is 18 miles away - oh yeah and its snowing heavily!
    Im feeling a bit better though so good news really. I keep trying to pretend the doctors dont exist, but every now and then you feel like you need something, even if its justr a sympathetic ear
     
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,724
    Likes:
    8,014
    UK
    What an awful practice that is! I hope the last remaining doctor is better.

    Still might be worth calling the out of hours - if you have flu I would have thought they would want you to confine yourself to your house for other people's sake if not your own - I think last year they had notices up in the surgeries telling people to turn back and go home if they thought they had flu, so as not to risk infecting other patients.

    I'm glad you're feeling better - keep taking it easy, though!
     
  6. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,444
    USA
    I don't know if this will help your case with your doctor, but here's our experience with ME/CFS and H1N1:

    My daughter picked it up first at college. We took her to her regular physician 3 times in 6 weeks. He insisted she didn't have H1N1 because she didn't have a fever (she did, actually, for her). After 10 weeks of "allergy symptoms" she could barely function. We ended up taking her to another doctor who did a chest X-ray and found pneumonia and gave her antibiotics. She did recover from the flu and pneumonia symptoms, but it was another 6 months (and a lot of Valcyte) before she was back to pre-H1N1 condition.

    I must have caught it from my daughter because I was housebound at the time and no one else I saw had it. We believed at that point that it was "allergy symptoms", so I didn't call the doc. After several weeks of illness and the 2nd doc visit for my daughter, I called in, described my symptoms to the nurse (identical to my daughter's except I said I had a 2 degree fever instead of saying my temp was 99.2). I was told that it was definitely H1N1, it was the only flu in the area at the moment, I wasn't to come to the office, and it was too late for antivirals. Because I have asthma, and had developed pneumonia-like symptoms, I was given an antibiotic when I requested it. That's when we took my daughter to the 2nd doc, btw, knowing she had the same thing I had. **sheesh** I ended up bedbound for several months and in a bad ME/CFS crash from H1N1.

    Moral of the story: H1N1 was very hard on this pair of ME/CFS patients. I would push for antivirals, if you can possibly manage it.

    I second the notion that you try another doctor, push the lung issues (H1N1 is famous for developing into pneumonia), and make sure that if you have a fever compared to your normal body temp, you make them understand that you DO have a fever. I really wish we had pushed harder for my daughter earlier instead of accepting the doctor's brush-off. If I had it to do over, I would be such a pain in the patootie, he'd give her antivirals just to get rid of me. ;)

    In your case, I'd insist on seeing that he wrote the H1N1 diagnosis and that you requested antivirals because of your lung issues and ME, and that he refused to give them to you. Then insist on having a photocopy of that record. Point out to him that if you develop pneumonia out of this flu, that you will bring his decision to refuse you antivirals under the circumstances to the health authority (or whoever), so that he is held responsible for the extra expenses/damages incurred. You can also point out (oh so sweetly) that if you don't develop any further serious illness as a result of H1N1, no harm done. :innocent1:

    He'll probably leap quickly down off his high horse when he's facing the risk of being held accountable, since he cangive you antivirals -- they're not in short supply. I suspect he's not giving them to you in order not to "play into your false illness belief". You might need a new doctor after that, but no great loss there as far as I can see. ;)

    It's ridiculous that we have to be so aggressive to get appropriate medical care, but when the risk is high, what else are we supposed to do? **sheesh**
     

See more popular forum discussions.

Share This Page