Name: Karen Country: Australia

i have had CFS since late 97 which became worse after a bad flu and pneaumonia in early 99. i was also nursing my mother who was dying of multi system atrophy. I was diagnosed with FMS later that year and was told to see a phisiotherapist, she started me on 10 sets of 10 basic stretch exercises.

after 1 week I was in so much pain that i would grit my teeth and cry after exercise every morning and have to go back to bed for most of the day. after 2 weeks i cut the exercises to 5 reps and found that i couldn't do anything else during the day, i was showering twice a week with help and had trouble even getting to the toilet.

i stopped exercising totally for a week just so i could get to my appointment, when i got there she told me no pain no gain and she wanted me to continue and then to start gym work in a fortnight or I'd never get better. I never went back.

it took me months to recover enough to do a few things for myself and my pain has spread to most of my body now instead of just my back,shoulders and head.

Name: Brooke Country: Australia

If it weren't so expensive, it would be laughable when doctors tell you that there's really nothing that they can do for you (except to recommend plenty of rest and pacing of activity) and then in their next breath turn around and schedule another appointment for you to come back and see them! As if you're going to pay another $100+ to be told the obvious?

It is ironic that doctors think that someone with M.E. needs to be TOLD to rest and not engage in too much activity; that we need this golden piece of professional advice (as if it hadn't already occurred to us ourselves!)! For someone with severe M.E, isn't it kind of obvious that even if they wanted to, they COULDN'T do anything but rest! And the notion of 'pacing' your 'activity' levels! It's absurd. When I was at my most ill with M.E. my activity level was limited to things like sitting up and brushing my teeth- even then I couldn't do that without rest breaks! Pace my activity levels? "Gee doc, thanks for that great advice, I would never have known..."

What do doctors really think 'pacing' 'activity' levels is for a person with M.E (in as much as, that they feel that they need to TELL us to do these things)? Do doctors think that we have to be TOLD not to engage in 'too much' activity?! It's not like you can pace activity when your body won't let you engage in activity in the first place! It's not like we're small children who need to be told to "slow down, don't eat too much or you'll make yourself sick". Our bodies have already put in place a mechanism that makes it physically impossible for the severely ill to do too much in the first place! We can't pace that marathon in order that we get to the finish line, because we can't even stumble up to the starting line!

When I was at my worst with M.E, all that my body would allow me to do was rest.

Name: Erik* Country: Switzerland

I am writing in behalf of my son (16 since 2 weeks), ill since december 2003 (eg. almost 18 months now), just got a week ago a diagnosis from a brave pediatrician, not yet acquainted very much with cfs/me and ready to read through all this documentations (canadian guidelines, etc. etc.). My son still being in danger of being harassed by schooldirector and child protection authorities and psychiatric clinic.

Was recommended a GET and behavioural therapy by the chief of a departement of children hospital. My son is homebound ever since he got november last a yeast treatment from a doctor (Perenterol), as of his most serious additional belly problems.

He does not think at all that this form of therapy will help him at all, as he sees already without this how little it takes to overexert himself (eg. the visit at home of a kind doctor), he does suffer serious post exertional malaise and eating is getting always a problem.

I am writing you from Switzerland, where just a short time ago a professor published in the swiss medical weekly an article saying that cfs/me is a psychiatric disorder and closely relied to fear traumata, fear denial, depression and other crap.

I do know after seeing the condition and the changes therein for such a long time now and after running from doctor to doctor first, that the medical personal are to a big extent a very strange kind. (I am really so sorry to say!)

My son would state here that you also could treat a broken leg with psychiatry if you would not know better.

And that never a doctor would get the idea to send somebody with a broken leg on a marathon; something which seems to him would be a good comparision of what was asked of him sometimes!

He just was not taken serious till we were lucky to find this pediatrician now.

And what my son does not know, the authorities are still seeming to go on... I really hope they will understand!!!

Name: [Name supplied]

Aggressive exercise at pain center in Cleveland. Forced myself to follow their program. Exhausted, all pain & symptoms exacerbated. Never got back to my formerly low level.

Name: Sharon*

GET: disaster for me. Despite tests indicating muscle metabolism abnormalities I was treated with this whilst an inpatient. Like others I was told I had to work through the pain and increased malaise. As a result I became more severely ill and disabled, pain levels went through the roof and ironically ended up with even weaker not stronger muscles. The muscles I use the most are the ones losing bulk and strength.

Name: Karen

I was diagnosed in 1988 by someone who was studying CFS. He warned me back then already that exercise while the virus was active was not beneficial. I proved it to myself that if I did a little too much, even just once, I would get worse.

In 2001-2003, I saw a doctor who clearly knows nothing about CFS. I was assured that if I would exercise I would "feel better" and "have more energy". I tried it for a couple days, and again, felt worse. This guy is now petulantly telling disability that I'm still sick because I won't follow doctor's orders -- he can't accept that I am following some OTHER doctor's orders, not his.

Paul Cheney was interviewed in 2004 about a recent study showing 100% of disabled CFS patients have cardiomyopathy, apparently from the virus settling in the heart, and he made it clear that *fibro* patients improve with exercise (because they don't have this heart condition), but that CFS patients cannot exercise.

In googling to see what (if any) mainstream media exposure that research got, I found a 1998 article saying that Dr. Martin Lerner also found cardiomyopathy, and advises "resting the heart ... to prevent the death of cardiac tissue". This study "explains why patients relapse with exertion".

Just recently, after being reassured by one of the doctors that I'm suing that regular exercise would give me more energy, I decided to try it again, to document the results. Nearly a month later, I'm still in more pain, and instead of having more energy at the end of a week, I had to spend the weekend in bed.

Name: Cindy Country: US

I too was strongly encouraged by physiotherapists to exercise and insurance doctors said worse things to me about malingering etc. I am having serious heart problems now likely due to the excess exercise for a person who has severe illnesses that worsen on exercise. I am housebound and bedbound a lot with worsening conditions.