A short sad history of ME/CFS

NEH

Mojisola wrote: »

I agree with all Dan's post!

Anyone with ME who has a really good GP is very, very lucky. It's a minority experience.

I'll just add that people with ME often get told, "I know someone who had ME/I've read a magazine article about ME/I saw something on the TV about ME. Those people got better by doing x, y or z". If you don't rush out and try the same thing, or try it but don't get better, then you obviously aren't really ill and like being the way you are. It's not surprising people with ME sometimes over-react when told the next thing they should be trying!

My last GP wasn't much help with Fibromyalgia as well...Yes he would write sick notes, refer me for treatment but as long as he didn't know the details....Even when i asked ot see my specilaist he didn't even ask who it was...

Now we moved this last week i am dreading have to register for a GP again....

mardatha

Ben, I know. I had other gps who werent good. But now am ok. Not getting at anybody, not trying to argue or hurt anybody, jsut giving my experience . We are all just discussing things, no right or wrongs.

TOBRUK

mardatha wrote: »

Ben, I know. I had other gps who werent good. But now am ok. Not getting at anybody, not trying to argue or hurt anybody, jsut giving my experience . We are all just discussing things, no right or wrongs.

Yes, everyone has their own experience. I am a little frightened to post on some of these threads incase of an attack or people taking things the wrong way! Life is hard enough dealing with a complex illness and just trying to get through each day.:)

DanE2010

I agree everyone has their own experience, what I have a problem with is people blatantly attacking someone and genralising. This thread has been a place for people to share their experience of ME and offer each other support and suddenly its taken a negative turn because one person didnt agree with the other etc and instead of accepting that one persons experience of ME and treatment offered etc is different it turned into "no your wrong, you have an attitude problem etc etc" and thats what I have a problem with.

If anyone wants to be that negative please go find yourself a home on the benefits board im sure you'll find a safe haven there, but please from now on let this thread continue in the positive manner in which it was intended, lord knows we have enough to deal with on a daily basis without having to come on here for a row!

DanE2010

sunnyone wrote: »

utter rubbish, if you need the tests thay are done but from your postings I can see why your gp dosnt listen to you and/or do any requested tests.

This one in particular is what im alluding to, no need for that at all and not needed on this thread. Im all for healthy debate but that went too far

prettypeach_2

DanE2010 wrote: »

Im really sad that this positive thread has turned abit negative here! In particular Prettypeach seems to be getting a hard time! Now let me just back her up on something here - Just because you have a very understanding doctor does not in anyway mean that all GP's are the same and il think you'll find most ME sufferers get very little help from their GP's because the majority do not know how to treat it or even believe it is really an illness!

Now with my doctor, and with the majority of GP's in my area (through speaking with friends and work colleagues) they are quite happy to fobb you off, you have to keep going back until they finally do something! They dont just give you a blood test for this or that because you have asked for it, not at all! oh if I was that lucky to have a GP who actually wanted to do his job! After 3 years of going to my doctor with my symptoms and getting no help (apart from anti depressants and CBT - now theres a surprise!) , routine blood test's done, unrine sample, blood pressure checked etc, all the rountine stuff, it took my occupational health doctor at work to suggest I was displaying symptoms of ME, went to my doctor and demanding to be referred to someone, turns out there was an ME specialist in my PCT! Didnt think to referr me before! and the first visit to the specialist he took one look at my medical notes and diagnosed me with ME.

So I think you'll find most GP's arent as helpful to investigate your symptoms and for all the posters above who have said you can get this and that done just by asking your GP you are definately in the minority and extremely lucky! Sunnyone in particular are you talking inregards to ME? Because il think you find the NHS dont do any test's for ME regardless of a clinical need, il find you'll find most GP's have there own opinions on how it should be treated and the NICE guidelines for treating it doesnt involve anything in the way of tests etc, has your son got ME? Pease dont generalise because you'll find what one ME patient recieves on the NHS can be different to the ME patient in the next town. ME patients get very little help at all and that is a known fact and we tend to get quite insulted/touchy when its assumed there is plenty of help/support for us on the NHS when it is very clear we dont!

Thank you Dan .

It's true we M.E.ers can be very touchy for the reasons you say. It's just such a headwrecker to have such strange and debilitating condition that is hard for others to see and that not even the doctors understand yet and whose existence is denied by many!

sunnyone

DanE2010 wrote: »

So I think you'll find most GP's arent as helpful to investigate your symptoms and for all the posters above who have said you can get this and that done just by asking your GP you are definately in the minority and extremely lucky! Sunnyone in particular are you talking inregards to ME? Because il think you find the NHS dont do any test's for ME regardless of a clinical need, il find you'll find most GP's have there own opinions on how it should be treated and the NICE guidelines for treating it doesnt involve anything in the way of tests etc, has your son got ME? Pease dont generalise because you'll find what one ME patient recieves on the NHS can be different to the ME patient in the next town. ME patients get very little help at all and that is a known fact and we tend to get quite insulted/touchy when its assumed there is plenty of help/support for us on the NHS when it is very clear we dont!

My son is suffering post viral fatigue but I dont believe he has ME, he has been ill for the past year (with this) but some of it could be his other health problems, my sons on three lots of tablets and hes a bit better now.

Every health condition is the same, there are good and bad GPs, if you dont like yours change it or put up with crap treatment without gripping about it, you have rights and if you dont exersise them you cant moan about the way that you are treated.

Read all of prettyinpeach posts before you critisise me Dan, I have and she is is argumentitive, dismissive of everybody elses posts and genrally just a horrible poster.

prettypeach_2

Mojisola wrote: »

I agree with all Dan's post!

Anyone with ME who has a really good GP is very, very lucky. It's a minority experience.

I'll just add that people with ME often get told, "I know someone who had ME/I've read a magazine article about ME/I saw something on the TV about ME. Those people got better by doing x, y or z". If you don't rush out and try the same thing, or try it but don't get better, then you obviously aren't really ill and like being the way you are. It's not surprising people with ME sometimes over-react when told the next thing they should be trying!

You are so right there Moj.
It's either you should try

---

and then seeing it as negative when you don't jump at it like it's going to cure you (having tried loads of things and none make a difference), or it's 'but you look really healthy' or 'Oh I get really tired sometimes'. Arrrrgghh!

Mojisola

sunnyone wrote: »

Every health condition is the same, there are good and bad GPs, if you dont like yours change it or put up with crap treatment without gripping about it, you have rights and if you dont exersise them you cant moan about the way that you are treated.

This is only possible if there are GPs any better than yours in the area. Our GP practice is, in general, very good but there's little help for people with ME. It's a case of doing what you can to help yourself. I certainly know far more about ME than any of our doctors. I know from reports from other members of our ME support group that there isn't a better practice to move to.

clouty

One of the foremost ME/CFS doctors in the States, Nancy Klimas, has made a series of videos about how to manage your illness, your doctor and so on. While it has been made for the American market, it's got a lot of helpful advice for people with ME wherever they are in the world.

“I've been sick for over 23 years. I've seen so many doctors
who just don't understand. It's still so terribly, terribly disappointing”

Only we know . . . the full impact of ME/CFS.

http://cfsknowledgecenter.com/expert-assistance.php

Highly recommended. Hey, the thread's been running on while I was away. Cool. DanE2010 you are lovely :T

Meanwhile, the research carries on. XMRV/HGRV may well be the underlying cause for ME. The initial research was carried out by the Whittemore Peterson Institute, which was founded with $5,000,000 private money from the Whittemores, their daughter Andrea has ME, in collaboration with Dr Dan Peterson, another world-class ME doctor, who first got involved when an epidemic of ME/CFS broke out in his practice in Lake Tahoe, Nevada. They could really use some PayPal donations.

Check out the politics here, http://oslersweb.com/index.htm the web site of Hillary Johnson, the author of the best-seller Osler's Web.

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