• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Im going to contact the reporter again

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
posted the following http://forums.phoenixrising.me/entry.php?1180-Wow..-i-may-be-about-to-get-some-home-help over a month ago and as per normal nothing has happened at all. So many rejections of help in the past.

All the crap Ive gone throu due to discrimation of ME/CFS. Im going to contact the newspaper (Advertiser) reporter who I spoke to mths ago.. in which then didnt put me into the article due to an org saying they would help me which NEVER HAPPENED and all they ended up doing is telling me to ring emergency numbers when Im in crisis (which I already knew to do).. which I then did only to be told I cant do that as that isnt what the emergency service is for and was refered back to them (the ones who had told the reporter they'd help me but didnt).. and now since ive been refered back to them by the ones they refered me too .. its been over a month and Im still without help from them.

Im being told (the guy did seem nice and I think he does generally want to help) its cause they are waiting for another service I was refered to in the past to respond to them (that other service too in the past never did anything to help me after telling me they would and ended up saying to me there was nothing they could do to help me).

This saga to get help and home help etc has now been going on for many years. So long that even when the orgs say they are going to investigate themselves to see what happened when I tell them what has gone on and when I tell them they have rejected me in the past.. that they end up not being able to find all the details of all my past dealing with them!!! (and then they make some kind of excuse for the one they mention.. eg "oh.. such and such org said they'd take you on and help".

Unfortunately I do not have the energy to dispute their investigations of what has gone on and go finding all the info to proof what has happened in the past with them eg past referals to them from hospitals, they even rejected request from a hospital etc etc which of cause their self investigation didnt mention. (I hope a reporter will listen and investigate my case cause all that info and dates and past rejections when other health services and orgs have rejected me themselves and refered me to certain ones will be there somewhere and could be all traced up).

Our health system is all discrimination when one has ME/CFS. If I had another illness I would of been getting help for the past 14 years and wouldnt have ended up with some of the other issues I now have got in top.. Ive been emotionally scarred. (My neighbours have rang the police as apparently I was screaming in my sleep.. Ive been traumatised).

Im going to contact the reporter again and tell her many months after I spoke to her Im still without help and being discriminated against due to our illness.

(Today Im like limp spagetti and feeling weak, my head is actually hanging as its too much effort to keep holding it up and havent got energy right now due to shopping yesterday and only just have managed to drag myself out of bed and here but I'll hopefully be up to doing the email to her tonight when I should be better.)
............................

Im also wondering if there is anyone else here who is in Sth Australia who has had a lot of ME/CFS discrimination with our medical profession and other orgs of various types here (I also had centrelink discrimination and discrimination from our legal system due to it) or who has had to fly interstate for treatment due to this as I want to take our stories to one of the current affair shows here to be heard together which I think will be listened to better then just one person.

I currently know of one other with ME/CFS who flew interstate due to no one to help here and who was in a hellish situation due to things in SA too.. it is very likely she too would take her story to a current affair show.

So Im thinking if I could get one other person.. maybe the three of us could get in touch with one of the reporters of those shows to tell our story together of what it is like in this state with this illness in which we are also highly discriminated against, in a state which is bad as far as disablity goes to start with.
(in the state statistics SA has the highest percentage of disability of the Aussie main land states and also are the state in which more are going unhelped by the statistics). Im thinking if we sent our current affairs show a email with three of us and our situations... maybe we are more likely to be heard... maybe we can get them extremely interested in doing a story on all this. People need to hear about what is going on!!

Any one in Sth Australia interested in doing this with me and the other who i think will do so too? (she was going to lodge a medical complaint against a doctor re ME/CFS who treated her bad.. same doctors who treated me bad too)
 

maddietod

Senior Member
Messages
2,856
In case this all continues to drag on, here's an idea for you. Start a file on your computer, called something obvious so you can always find it. Write absolutely everything connected to this issue on your computer, and put the letters/notes in this file. If you ever stumble across something you wrote ages ago, stick it in there too.

Bureaucrats are impressed by paper trails, because they stand up in court. Anybody can say "I've been asking about this for years!" Relatively few can say "Here's copies of everything I've written to your people, and notes about my phone calls." Dated notes about phone calls, with names, are very persuasive.

My father was audited many many years ago. He gave the agent well-organized boxes of literally every single receipt from the years in question. Guess who "won" that audit?

Your idea of a group fighting together is brilliant.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
In case this all continues to drag on, here's an idea for you. Start a file on your computer, called something obvious so you can always find it. Write absolutely everything connected to this issue on your computer, and put the letters/notes in this file. If you ever stumble across something you wrote ages ago, stick it in there too.

Bureaucrats are impressed by paper trails, because they stand up in court. Anybody can say "I've been asking about this for years!" Relatively few can say "Here's copies of everything I've written to your people, and notes about my phone calls." Dated notes about phone calls, with names, are very persuasive.

My father was audited many many years ago. He gave the agent well-organized boxes of literally every single receipt from the years in question. Guess who "won" that audit?

Your idea of a group fighting together is brilliant.

Yes, and perhaps you should email your notes to yourself, that way if your computer crashes, you do not lose the data.

GG