Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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NHS says flu dangerous to PWME

Discussion in 'General ME/CFS News' started by Jenny, Nov 2, 2010.

  1. Jenny

    Jenny Senior Member

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  2. Sasha

    Sasha Fine, thank you

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    That's really interesting, Jenny! Last year I asked my GP if I was on the priority list for the swine flu jab (I had been for the seasonal flu jab). He said that I wasn't and that it wasn't up to him but that there was a list of conditions that people had to have to be eligible. I said that I thought that people with neurological diseases were on the list; he asked me if ME was a neurological disease (he's only been treating me for four years!); I said it was, according to the WHO; and he then looked for ME/CFS on a big list called PRIMIS and couldn't find a "read code" for it, which, he said, meant he couldn't give me the jab.

    I managed to talk him into giving me it anyway but I'm glad to see that this advice is now coming from the NHS itself. It's ridiculous for PWC, many of whose illness started with a flu-like infection, not to get the jab if they want it.
     
  3. Esther12

    Esther12

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    I thought it would be because we've shown ourselves to be emotionally incapable of dealing with life, not classed like this:

    chronic neurological disease (neurological disorders include chronic fatigue syndrome, multiple sclerosis and Parkinson's disease)

    Has someone inflitrated their admin?
     
  4. Jenny

    Jenny Senior Member

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    Yes, Sasha, I think this is new. Perhaps we should ask them why!

    The times may really be a-changing!

    Jenny
     
  5. Sasha

    Sasha Fine, thank you

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    Hi Esther and Jenny - yes, I think this is a really good sign. It's only a few months ago that their NHS patient info page on XMRV was filed under the "psychiatric" subtree until people complained and they moved it.
     
  6. SOC

    SOC

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    UK NHS sure is schizoid about ME. Isn't it their claim that ME is a psychiatric illness? But you can't donate blood and you're high risk for H1N1. Uh huh.......

    My daughter and I didn't get an H1N1 vaccine in time last year because our doctor said we weren't high risk. :rolleyes: Then this doctor told us repeatedly that all our daughter had was allergies because she wasn't running a fever. :headache:

    I hadn't been out of the house for weeks, but we both got H1N1 which progressed to pneumonia. Most likely my daughter brought it home from college (no, a PWC in a college environment is not high risk :rolleyes: Sheesh!)

    Fortunately a different doctor sent my daughter for a chest X-ray early in the pneumonia stage and we both got antibiotics before the pneumonia got bad.

    I was bedbound for about 3 months. My daughter was dead-girl-walking (barely) for at least that long. H1N1 was easily a 6-9 month setback for both of us. We were never hospitalized, but it was a BIG hit for us PWCs. My advice is: Get the vaccine. Even a month long flare is better than what we went through. :In bed:
     
  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I've read several places (Alison Hunter Memorial foundation and I think Dr. Bateman's site) that 1) vaccination can cause a flare (which we all know anyway), although I think the normal flu vaccine is not as bad as some others (not sure about H1N1) and 2) we might not seroconvert anyway, which means that our body might not get immunity from the vaccine. So it could be a flare for nothing, rather than a flare for immunity.

    I don't have any actual studies on this, have not seen them cited (although I haven't yet looked through the non-footnoted citations on ahmf), and I have only a bachelor degree in biology (and I kinda forgot some things), and I'm unclear about the relationship between what parts of our immune system are broken and what parts would confer long-term immunity.

    But 2) is something to consider, research if you can, ask a specialist if you have one... and maybe someone who already knows and can cite a study will post...
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    However, it's really cool that your health authorities are starting to realize some things and state them publicly :cool:
     
  9. SOC

    SOC

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    Dr Lapp's website from last fall says they generally don't recommend flu vaccines for the reasons you mentioned. Dr Lerner, OTOH, gave us flu shots this year. I don't think there's any research on the matter -- it's more clinician experience that drives flu vaccine recommendations.

    My guess is that what PWCs really need is a local doctor willing to give Tamiflu at the first sign of flu. It has to be taken within 48hrs of illness onset or it doesn't work. Unfortunately, many of us don't have a PCP willing to do that because they don't believe we're at risk (3 rare cheers for the UK NHS on this one) and think we should just tough it out like everyone else. Our specialists are usually too far away for us to get prescriptions filled within 48hrs of flu onset. **sigh**

    Early in our illnesses, when my daughter and I felt like our immune systems were in overdrive, I took the chance of skipping the vaccine. Later, when we were catching everything under the sun, I preferred to take the vaccine. It's not an easy decision, IMO.
     
  10. Otis

    Otis Señor Mumbler

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    I agree it's not an easy decision.

    I got Tamiflu a couple of years ago. I have a great (but expensive) PCP - he phoned it in and my wife picked it up. I never had to leave my bed. It helped with the flu AND I got a minor but appreciable period of reduced symptoms - which I never get - it's just been one long march downward. No one will ever convince me that I'm not fighting one or more viruses.
     
  11. free at last

    free at last Senior Member

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    Ah Flu my favourite panic pass time, No really after the flu like onset of ME, and then a bad experiance with a flu both me and my partner had, its lead To PTSD, ( actually understandable phobia ) had my flu shot 6 days ago, paid for at tescos yes thank you a bag of potatoes some eggs, a PTSD reliever, and possibly life saving vaccine, at the very least a holiday in hell for a week, could be canceld. great never wanted to take that fight anyway. This news is actaually very very big news, a complete u turn of the highest order. what ever next GPS being advised to treat the condition seriously ? wonder what ramifications this will bring like DWP acceptance for starters. wonder what wessley thinks of this, bet he oppossed this move ( if asked ) infact bet he protested ( if he wasnt ) this has far reaching implications that we havent even thought about yet im sure. hey i want a refund for all those injections i paid for. the ones i was always entitled to. but only just admitted too. This is really very surpriseing, as it weakens there position and strengthens ours. what gives ? recent studys like the viral and non viral onset cfs immune dysfunctions evidence. Or let me guess maybe xmrv. or the scottish white blood cell die off in ME children indicating a virus, all starting to hit home now is it. this aint about us, its about covering there backs, because the evidence is getting stronger, and they are getting scared. nice one. next year ill spend my tenner on a curry and still get a flu shot. times really are changing, so glad to be witness to this, for me, and everyone who has been neglected. wow.
     
  12. Cloud

    Cloud Guest

    Hopefully the tide of contradictory information and public policy out of the UK recently is a sign of growing pains of positive change. It's certainly better than the old school mentality. It's really encouraging to see the NHS admitting it's a Neurological disease.

    Vaccination is a tough decision for us. For me, catching the flu is equivalent to getting a vaccine.....both are likely to cause a relapse. But I do consider the vaccine a slightly greater risk because I believe the adjuvants are part of the problem. I think the h1n1 this year is a 2fer being combined with tetanus. There is no way I would get that vaccine......talk about PTSD, the thought makes me shudder. I'll take my chances with my bubble boy germaphobe routine all flu season. Plus, I have Tamiflu ready just in case.

    I really believe this is an individual thing. That's true for everything with us...but very much so with this decision. My mom has COPD...I tell her to vaccinate.
     
  13. alex3619

    alex3619 Senior Member

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    Hi,

    Just my three dollar note's worth of comment, but large organizations like the NHS have many different groups within them. The psychobabblers have always been able to rely on the general medical community being extremely ignorant about ME and CFS. Now we have so many good studies involving XMRV and other things (XMRV gets much of the press, but it isn't the only thing out there) that more and more medical people are finally realizing the current state of affairs, or at least I hope this is what that means. It isn't the people who have already decided who will determine the outcome, its the people who have been largely uninformed and are now just waking up, and the scientists who keep producing breakthrough studies.

    Bye
    Alex
     
  14. *GG*

    *GG* Senior Member

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    In the US I think the combo shot is for H1N1 and the Seasonal Flu shot. FYI

    Which I did not get for free at work, and will not be getting. My last Tetanus shot was in 1997, don't want to get that either!

    Last year I saw 1 of my CFS Drs and asked him what he thought of the H1N1 and flu shot, his wife was pregnant, and he has 3 children, he told me that none of them get the shots. He said make up your mind with that info. So I think he was telling me not to get the shot. Although, I wonder, I think my immune system has shifted. I used to get night sweats quit a bit, not anymore, also don't feel as fluish as in the past, 1st 7 years. Perhaps it is due to being on LDN for over 1 year now and 5,000 IUs of Vitamind D for a year, and 8,000 IUs in the winter.

    GG
     
  15. glenp

    glenp "and this too shall pass"

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    As another poster mentioned , my CFS physician also recommended not to get the flu shot and gave me tamiflu to have on hand just in case. He said to take it at the first sign of flu

    glen
     
  16. Min

    Min Guest

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    How can a somatoform disorder be made worse by 'flu? Would any weasels care to explain that one?

    I was very ill with swine flu last year (if you haven't had it, perhaps you should consider the jab - I was weeks in the most awful pain, it was agony wherever my body touched the bed despite the memory foam topper, & Tamiflu just made me itch like mad) & now don't know whether this year's jab is worth me having - please can anyone advise?
     
  17. Sasha

    Sasha Fine, thank you

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    I insisted on getting an immediate prescription for Tamiflu so I could have it in the house in case I got sick. I argued that if I got sick, I'd be too ill to organise the whole "call a flu-friend to organise pick-up" scenario - in fact I'd be unlikely to be able to either make it to the phone or be coherent if I could. I live on my own, am severely disabled already and would be extremely vulnerable if I got the flu. Having it in the house already is the only realistic option in that situation.
     
  18. free at last

    free at last Senior Member

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    if you had H1N1, Then you should be immune. but that also depends on the strain around, its possible there will be others, which
    you can catch, its a tough call, i dont think the seasonal shot ( which does have H1N1 in it ) has the adjuvent that was in the standalone swine flu shot of last year, ( pandemrix ) that seemed to me more dangerouse to us than a seasonal shot. I have had the shot, and i had some symptoms for about 2 days. but compared to fighting for your life. not even close. maybe others will react worse, and they have to make the choice if they think full blown flu will be no worse. Of course this assumes it works, and theres evidence it might not be as effective as thought. But for me ill take it. anything to prevent the worst case scenario lungs filling up with water, or heart attack, all distinct possibilleties im afraid. good luck everyone. im stressed just thinking about it. I dream of summer.
     
  19. Wonko

    Wonko Senior Member

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    The other side.
    I suspect that people are being too optimistic about this - it's known that some mental health problems depress the immune system - so in theory anyone deemed to have such a condition is more at risk from N1H1 - so the NHS's new advice doesnt neccessarily indicate any change of position - after all they have millions of spare dozes of this vaccine which were panic ordered..

    I hope I'm wrong and this does indicate a change in position/policy in our favour but I really doubt it
     
  20. Overstressed

    Overstressed Senior Member

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    I had last year my shot, in Belgium was this vaccine with adjuvants. I can tell you, I felt horrible afterwards, first I got fever after the vaccine, and then my symptoms got so worse. My ear was buzzing heavy, tired, and pain all over.

    No more vaccines for me, it activates the immune system too much, and by this, the virus is replicating more, causing worsening symptoms .

    OS.
     

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