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GP 'very unusual to have ME so bad for so long'. Am i the only one?

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
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
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
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.
 
Messages
15,786
@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.
 

eafw

Senior Member
Messages
936
Location
UK
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
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
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.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
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.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
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 :)
 

user9876

Senior Member
Messages
4,556
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 :)

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.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Welcome from another longtime patient. I got ill in my teens, and homebound couch surfer now.

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.

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.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
Welcome Raines,

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

Hi Helen, I cant make the link work I just get an error page, can you post it again please?


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.

justy I totally agree. The only thing my GP can offer me (appart from changing antidepressents again) is a ME clinic. and while I am not wanting to talk to a psychiatrist again (total waste of time last time), or have another go at CBT (some bits were helpfull, others weren't), or do GET (ins't a mild form of GET what we all do anyway? increasing activity when able reducing when needed?), I have decided to let him refer me to the ME clinic next year.
I have to tell people all the time that I have ME and depression, and that the depression is caused by the ME, not the other way around. Some people get this, but many just don't, and think that treating the depression will cure the ME. When i try and explain that they are wrong I can see them just thinking that I'm protesting too much.
I totally understand why people stop going to their GP and fighting to get people to understand. It makes total sense that a lot of people like us just drop off the radar.
I hope your rheuy appointment in January goes well.
25 months on the waiting list, our good old NHS at its best.