What will happen to M.E me sufferers?

Nick_Knock

Post Viral Fatigue is very simular to ME/CFS but lasts less than 6mths - once symptoms have been present longer then 6mths the diagnosis changes to ME/CFS (or at least thats my understanding of it anyway )

7roland8

Well I think my Dr would still call it post viral fatigue or CFS - but had it since 1996 after a virus. So really I think they are all pretty much the same - we all end up with the same symptoms. I don't really care what they call it - I often call it different things myself - post viral fatigue does sound pretty lame for something that lays us up for so long!

Regarding medications - I don't get given anything either - just cope on my own and take paracetamol if needed.

TOBRUK

7roland8 wrote: »

Regarding medications - I don't get given anything either - just cope on my own and take paracetamol if needed.

I wouldn't be able to cope without the medication, I can hardly move in the morning until I have taken medication and then I have to wait for it to kick in before it is possible to become mobile - I sit still for about an hour or so! Even with all the medication I still have pain.

louisebt

I have suffered a few health issues for some years, I've been unable to work for 9 years come next month, my 'current' diagnosis are M.E, Vertigo, Agrophobia, Depression, possible bi polar.... I only go out to take my dogs for a walk (i live on the edge of forestry at the moment), I was diagnosed with M.E about 5 years ago after paying privately to see a neurologist... my vertigo prevents me travelling (mkaes me very sick) and even with someone with me, to go out i mostly go in walking distance and not far from the house.

I have been in incapacity benefit now for about 8 1/2 years and DLA about 7... I get lower rate care and mobility.

When I get called for medicals I have them at home (i did make it to 2 over the years but only because where I lived at the time was close to the centres), I now have a CPN who helps me complete the forms and ensures I get all the help I need.

Good luck with your medical if you get called, I sent my forms back a month ago so am waiting to find out if I face another medical

surfsister

Ewan154 wrote: »

Also- no I did not get a firm diagnosise or referred to a specialist . The doctors said it was post-viral fatigue and that was it.

I went to the doctors for years telling them I felt tried all the time, and they diagnosised me with depression. I tried alot of different doctors but got no where. In the end it was a locum doctor that did a blood test and finally diagnosised my with post-viral fatigue.

I feel very short changed here by my doctors.

I didn't realise a blood test can diagnose ME. Is this new?

My daughter has it and went to a specialist centre but it's taken 10 months to get this far. She's had about 30 blood tests so far!

TOBRUK

surfsister wrote: »

I didn't realise a blood test can diagnose ME. Is this new?

My daughter has it and went to a specialist centre but it's taken 10 months to get this far. She's had about 30 blood tests so far!

There isn't a blood test to diagnose ME.

moneydad25

jazabelle wrote: »

It's a separate condition to ME. It's something you can get after a severe illness, but the symptoms are pretty much the same. There is a bit more info on it here.

Actually CFS (chronic fatigue syndrome) is the new name that's used instead of ME because ME means Myalgicencephalomylitis which refers to pain and swelling of bits of the brain which doesn't actually occur in the illness.

Post Viral Fatigue Syndrome (PVFS) is basically the same condition, but brought on after a virual infection or virus has occured.

Fibromyalgia Syndrome (FMS) is another similar/same condition - differences are usually seen as pain being the primary symptom with fatigue as a secondary symptom.

Post Traumatic Stress Disorder (PTSD) yet again similar but occurs after a traumatic situation has occured.

What you're diagnosed with seems to depend partly on which group of docs do the diagnosis. FMS is diagnosed generally by Rhumatologists and can be 'tested' for by prodding you in tender spots. You have to react to a specific number across all 4 quadrants of the body to be diagnosed this way. If this diagnosis isn't given, or if pain is less of a factor than fatigue one of the other diagnoses is normally given.

Generally in my experience most self help groups around the country will offer support to people with any of the above conditions, and learning how others cope is often the best way of learnign to cope yourself because you get the low down on what might work from someone who knows rather than dealing with docs who haven't got a clue mostly.

Scuse long post btw.

surfsister

TOBRUK wrote: »

There isn't a blood test to diagnose ME.

no they regularly test for blood pressure/level of salts/blood/ iron etc to keep a check on health.

my daughter also attends a specialist me centre, v good it is too!

surfsister

anyone heard? we got our case referred to managers took 6 months and just had a blanket no! disability people going to help us fight it

stumpycat

As Moneydad 25 said - CFS tends to be used now as the 'encephalitis' bit of M.E. (inflammation of the brain) doesn't actually happen, Encephalopathy has been suggested as an alternative...
As a bit of background, I had ME following a Coxsackievirus infection in 1989 - after5 years I had recovered, but in 2000 I got another infection which lead to fibromyalgia.

Tobruk and Ewan 154, and others, if you have pain problems have you been seen by a pain management clinic? (please excuse me if you've already been through all this)
I know I'm not allowed to mention medications on this forum ( with good reason) but there are lots of things that can be tried that are not obviously pain killers, and some have the effect of giving more energy.

Pain is awful - but people have sympathy towards it. Describing fatigue is much more difficult - and exhausting! My best wishes go to anyone else with problems!