ME in the Guardian, as a neurological disease

[MeSci]

Yes, you might be able to get through university with mild to moderate ME/CFS if you are allowed to pace yourself...but can you hold down a job afterwards? Very few jobs allow this flexibility.

That is indeed the main problem with regard to disability and employment. The authorities are addressing it from the wrong end. I would like to see how many rejections disabled people - and specifically those with unpredictable conditions - get from employers compared with healthy people.

But then the psych squad could just say that we weren't trying, or that our negativity made us give off a vibe that we just weren't willing to try.

 

[MeSci]

Hi, Mel9. It wasn't chipmunk1 that wrote that. That was the presumably now deleted post on The Guardian's site. You can tell when a member is quoting someone else by the quote boxes with the yellow orange background.

It's not always obvious. My laptop doesn't show the highlighting clearly if I have the screen at some angles, and sometimes people get the quote mechanism wrong, so that their own text looks as though they are quoting, and sometimes the quoted text isn't highlighted properly. It's pink for me, by the way.

I spent quite a few minutes trying to figure out @chipmunk1's intentions!

It's best to add a few words outside the quote for clarity, e.g. "Someone has posted this comment".

 

[adreno]

That is indeed the main problem with regard to disability and employment. The authorities are addressing it from the wrong end. I would like to see how many rejections disabled people - and specifically those with unpredictable conditions - get from employers compared with healthy people.

But then the psych squad could just say that we weren't trying, or that our negativity made us give off a vibe that we just weren't willing to try.

I am actually in that situation right now. I managed to finish my degree recently (although it took longer than the norm). But I don't see any way I can handle a job where I have to function every day, no matter how I feel.

I am considering the possibility of doing a PhD, as it allows for some flexibility, but the workload it still high. I have kids and need some sort of income, and there is no way I am able to get disability.

I finished my degree because I wanted to (stubbornness?), but I am not convinced that pushing people with ME/CFS through university will solve anything.

 

[Sidereal]

I find this article somewhat troubling. If you need all these accommodations to attend university it is highly unlikely that you will be able to hold down a job once you graduate so I'm not sure if the risk to health is worth it. It's nice to have a sense of accomplishment but ME is cruel, unrelenting and punishing. Graduate school is what turned my formerly mild ME (which was still life-limiting) into severe disability. I had no idea at the time that overexertion can cause seemingly irreversible damage.

 

[barbc56]

In the states, IN THEORY, you are guaranteed some type of support if you have a special education lable until the age of 21.An example pertinent to us might be OHI or other health imparments.

In most Universities there are also programs where a case worker can help you with such tasks as helping you organize, sometimes attending classes to help you organize your notes, getting extentions for assignments, etc.. I have no idea if these programs would apply or the same quality of services, if you don't have a Special Education diagnosis.

http://www2.ed.gov/about/offices/list/osers/idea35/history/index_pg10.html
This was over ten years ago and with all the funding cuts, I have no idea if these programs still exist in the same form.

There are laws that say you can have accommodations to be able to do your job, I have heard so many stories of employers making it extremely difficult to stay employed through other means that skirt around these laws. I have known this to happen to others as well as mysel. After 26 years of stellar evaluations, I was put in no win situations and even intimidation carried out in subtle ways.

When I took a leave of absence, under The Family Leave Act, without pay as I had used all my sick leave, I lived on my savings and credit cards for a year hoping to be able to go back to work. My colleagues even offered to donate sick leave, bless them, but were told for every 10 days of sick leave donated, I would only get one, so it wasn't worth it. I still don't know if this was true.
http://www.ada.gov/2010_regs.htm

That with crummy health insurance, I ended up having to declare bankrupcy, something I had would never have even fathomed, happening to me. It turns out that most bankruptcies are related to health bills. It was a devastating experienc, even though I was lucky to get approved relatively quickly.

That being said, I would think for a lot. of us, with the severity of this damn illness as well as the sometimes relapsing and remitting, even these type of accomodations wouldn't help.

Basicall, we are put in a no win situation. As well as those who have other invisible illnesses like ourselves that aren't accepted.

I certainly hope the disgusting comment was a troll. Whichever, some still believe what he/she said or some variation of this.

Reality doesn't always match with the way things are supposed to work.

Sorry for getting a bit off topic and ranting but at the moment, I'm too tired to edit.

Barb

 

[Sinclair]

On the CFS vs ME issue, and denelianism, an anecdote:

I went to an hematologist yesterday and this was the dialog:

me "Are you familiar with myalgic encephalomyelitis?"
Dr "mmmmm ........nnnnoo"

me "It's a neurological pathology recognized as such by the WHO since the sixties"
Dr "...ok...and you are here for....?"

me "..well, some refer to it as Chronic Fatigue Syndrome..."
Dr "....oh....of course I know about CFS!!! You should have mention it..."

I think from experiences like this that it seems difficult to find a mainstream MD updated with the state of the art in the field.

 

[Little Bluestem]

In the US "the state of the art" is still CFS. ME doesn't officially exist.

 

[alex3619]

I am considering the possibility of doing a PhD, as it allows for some flexibility, but the workload it still high.

You have huge flexibility, but the workload is actually higher than the final year of undergrad. You can however do a PhD part time.

 

[alex3619]

I think from experiences like this that it seems difficult to find a mainstream MD updated with the state of the art in the field.

Its been claimed the average doctor is seventeen years out of date. This starts at about five years out of date on leaving medical school, and keeps getting worse. For something like CFS and ME where much of the published claims are wrong or speculative, and textbooks often have only a paragraph and sometimes none of that paragraph is accurate ... what chance does a doctor have? Only those who have a personal commitment have a chance.

 

[Sinclair]

Its been claimed the average doctor is seventeen years out of date. This starts at about five years out of date on leaving medical school, and keeps getting worse.

Do you have the reference for this? Medical establishment is particular hard in my country.