Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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GP 'very unusual to have ME so bad for so long'. Am i the only one?

Discussion in 'General ME/CFS Discussion' started by Raines, Nov 29, 2014.

  1. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    Hi all
    I’m new, i've been lurking around as a guest for a bit and have now joined. So Hello!!

    A couple of days ago i had an appointment with my GP and he told me that it was very unusual to have ME for so long at the level i am.
    So i’m feeling like more of a freak than usual and really want to know that i’m not the only one.
    I got ME when i was 14/15 and have had it for about 15 years. I am currently about 30% on the activity scale (able to go out about once a week for a short trip) and have been between 20% and 30% for the last couple of years. A few years ago i was up to 40% maybe a bit higher.
    I don’t seem to have the periods of good times some people have.

    I just need to know that i’m not a total freak, that i’m not the only person who has been so ill for so long.

    I hope it is ok that i posted this question here.
    Lorraine - new member
     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    Not in the slightest. Join the club. I've been sick for about 15 years, and there are others here who've been ill a lot longer. I'm reminded of what Groucho Marx once said:
    Sadly we haven't got much choice!
     
    Last edited: Nov 29, 2014
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  3. Sidereal

    Sidereal Senior Member

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    Hi Lorraine, welcome. Nope, it's not unusual to be moderately-to-severely affected for decades. Some people do get remissions, but many people are continuously ill. Some get progressively worse. It varies.
     
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  4. Snow Leopard

    Snow Leopard Hibernating

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    Sorry to hear about your experiences. It can be tough when you can only manage a little bit of activity each day.

    Unfortunately it is not unusual to have ME for so long, nor is it unheard of for activity levels to be so low.

    Much of the literature unquestionably promotes the myth that patients improve over time, due to their unquestioning faith in the power of questionnaires over objective measures of functioning. This is because patients tend to feel more (mentally) positive over time, learn how to pace etc. and thus tick different boxes on questionnaires, despite objective functioning (eg memory or activity) not changing.

    But apart from an initial improvement, not long after onset, most patients, at least those who I know do not improve unless they find a treatment that works.
     
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  5. Valentijn

    Valentijn Senior Member

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    @Raines - CFS has "chronic" in it for a very good reason :p While teens do seem to have a better chance of recovery, it's far from guaranteed. And being ill for decades is quite common in adults with ME/CFS. Some even go into remission for years, then have a severe relapse.

    Your GP might benefit from reading http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf , since it sounds like he doesn't know much about ME/CFS. Prognosis is briefly discussed on page 7 of the pdf (page 1 of the document). It includes links to research articles which support the data in the primer.
     
  6. eafw

    eafw Senior Member

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    It might be unusual in your GP's experience, that is as a percentage of people they see in clinical practice, but it is not unusual for the condition itself.

    A significant number of people suffer at the more severe end of the spectrum for years, unfortunately.

    Quite a few of us here so feel free to ask your questions
     
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  7. Min

    Min Guest

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    I have been severely affected for years, during which time I have never once been offered effective treatment or even asked what my symptoms are.
     
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  8. justy

    justy Donate Advocate Demonstrate

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    Hi, please don't feel like a freak - so many here the same. Ive been ill off and on for twenty years - one of the lucky ones that had a long remission to near normal but suffered a severe relapse 6 years ago. Gradually worked up to about 40-50% then since June of this year have been at my lowest level ever - now firmly in the severe end of the spectrum.

    I have seen a good M.E doctor abroad, but unfortuatnely am now too scik to travel for treatment and cant tolerate any of the meds given to me to try at home... readjusting again downwards for me im afraid. But I did have a remission for about 8 years so I know it is possible. In that time I had two more children, got married, moved to the other side of the world (and back again!), went to college, renovated two houses, started working, trained as a volunteer, went on holidays abroad and even did a couple of whole day hikes and taught myself to swim properly. That was at about 90% functioning so I know it is possible.
     
  9. snowathlete

    snowathlete

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    As Val suggests, give him the primer to read. He obviously doesn't realise that you aren't the exception, you're the norm.
     
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  10. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    Thank you everyone, It was just what i needed to hear. knowing your not the only one is so important sometimes.
     
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  11. Marco

    Marco Grrrrrrr!

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    Welcome Raines

    As you've already realised you're far from alone. There does seem to be a better chance of full recovery in younger patients but not always. It started for me aged 22/23 and for a while I was able to work full time despite the symptoms, then only with great difficulty and finally I was forced to take medical retirement. It will be 30 years in total next year.

    So a pattern of ongoing deterioration for me but everyone is different as Justy's experience shows so please don't think anything we say will necessarily apply to you.

    Good luck with educating your GP.
     
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @Raines

    Where you live will dictate whether there is any possible treatment options for you if you have ME.

    There are many knowledgeable people here who can answer questions you might have.

    People in the ME community have been greatly marginalised it is a difficult illness both physically and socially.
    There is a learning curve involved in understanding ME.
    If you have any friend or family member who you can educate while you are investigating this illness that would be a great benefit to you in the long run.

    Welcome to PR.
     
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  13. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    Thanks again everyone.

    eafw I think your right. just because its unusual in my GP's expierence doesn't mean its unusual.
    i would have quoted your post here but have no idea how to do that.

    Valaentijn thanks for that link, it looks interesting. and a really good thing to ask my DR to read.
    p.s. love the book Good Omens great quote on your posts :)
     
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  14. user9876

    user9876 Senior Member

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    I suspect many patients with severe in the UK just give up visiting GPs or are too ill to get to see the GP so GPs assume they are better and get a false Idea of ME.
     
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  15. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Welcome from another longtime patient. I got ill in my teens, and homebound couch surfer now.

    I suspect that happens elsewhere and in specialties as well. I assume neurologists' belief that patients they cannot diagnose "usually get better" has more to do with patients giving up on getting any rational help or useful support from them than "most" getting better.
     
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  16. justy

    justy Donate Advocate Demonstrate

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    I have recently been told by a GP that my large body jerks are 'not M.E symptoms' that my need to use a wheelchair is 'not an M.E thing'. The rheumatologist said my joint pain were 'not an M.E symptom'.

    It hit me the other day that they don't know what severe M.E is like at all - they just don't see that many housebound patients, they see the milder 'walking' cases. They certainly need educating. In the meantime my GP is freaking out about the Mycolonus type issues and sending me to a neurologist - I don't expect any help from them.
     
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  17. alex3619

    alex3619 Senior Member

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    I think its the norm. I was diagnosed with CFS (Holmes 88) 25 years ago. I had been sick for years at that point, and debatably for about 46 years. Most with ME make no full recovery, though large numbers do go into partial or temporary remissions. I have read various estimates of recovery from 1% to 10%. I don't think we really know, except that full recovery is rare.

    The problem with many GPs is multifactorial. First, they confuse ME with post viral fatigue. Most with post viral fatigue recover in the first year, and nearly everyone within five years. Yet most with post viral fatigue do not have ME. Second, there is a lot of confusing information out there. Most with idiopathic fatigue recover within a few years I suspect, though its not clear there are any good studies on this. This is compounded by misinformation. For example, a while back it was stated by someone in the UK parliament that 90% of ME patients recover in the first year, whereas the actual quote was that of those who do recover 90% do so in the first year. We also know, largely anecdotally, that people who do not recover in the first five years have a lower chance of recovery.
     
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  18. Helen

    Helen Senior Member

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    Welcome Raines,

    ME-doctor and professor Gottfries got ME 1957!! Here is an interview to forward to your GP.
     
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  19. Valentijn

    Valentijn Senior Member

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    So they were rushing to investigate and identify the underlying cause of those mysterious "not ME" symptoms? :rofl:
     
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  20. justy

    justy Donate Advocate Demonstrate

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    Ha Ha - no - I imagine I can expect a couple of years on the waiting list for the neuro. I have an apt with an NHS rheumy in Jan and will by then have waited 25 months to see one!
     
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