1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. brenda

    brenda Senior Member

    Messages:
    1,243
    Likes:
    598
    UK
    I think you have misunderstood. Tania is bringing a law suit and it could be thrown out if I am correct if it is shown that she went public with her complaints which she has done. It is probably too late to stop this as the party will have copied posts already. I did warn about the possibility of SA reading her posts yonks ago and I was right.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,270
    Likes:
    3,676
    Cornwall, UK
    Wouldn't that only apply if it were a jury trial, which seems unlikely?
  3. Kina

    Kina Moderation Team Lead

    Messages:
    5,260
    Likes:
    3,621
    Ontario, Canada
    I didn't misunderstand. I was trying to say that legally Tania has nothing to worry about unless she has libelled/defamed somebody. Which she hasn't.

    It might just be that the SA wants this thread gone because it's to their detriment.
    Valentijn likes this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,270
    Likes:
    3,676
    Cornwall, UK
    I worry that Tania could accidentally defame someone due to misunderstanding someone's words or motives.
  5. Kina

    Kina Moderation Team Lead

    Messages:
    5,260
    Likes:
    3,621
    Ontario, Canada
    You can really only defame somebody if you are lying about them on purpose -- making up stuff to make them look bad. It's really hard to even prove defamation and usually has to do if somebody's public persona is being ruined. I don't think we reach that wide of an audience -- yet.

    From our rules:

    Valentijn and golden like this.
  6. Indigophoton

    Indigophoton

    Messages:
    62
    Likes:
    122
    UK
    I concur.

    I appreciate what @Kina has explained, which is very clear and supportive.

    I'm also aware that the specifics might vary from country to country. Here in the UK for instance, there is a website that offers help and guidance in dealing with the UK benefits system. Many people post in the forum about their direct, personal experiences with various doctors and assessors, and names are not allowed to be used even for simple factual recounting of what happened. The site is run by a barrister. This makes me think that one needs to be careful when naming people, even when it is truthful/accurate. But maybe this is specific to the UK.

    @Tania, maybe you can just check it out with your advocate? She sounds very on the ball, and would probably be able to quickly clear it up for you. Meanwhile, glad things are mostly moving forward well!
    MeSci likes this.
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,061
    Likes:
    8,439
    Amersfoort, Netherlands
    I don't think there's anything wrong with using their names or posting images of the letters they have sent. Tania is allowed to discuss her experiences, even in the unlikely case that she actually does manage to accidentally misrepresent something.

    They don't want their names up here because they do not like being accountable for their mistakes. But accountability is the only thing that results in those mistakes not being repeated.

    I wish they'd spend their time on PR learning more about the actual disease and the problems with the psychological theories for it, or even use Tania's feedback to reflect on the problems with their own behavior. Coming here just to read what's being said about themselves and making threats to get it stopped is pointless and petty, not to mention an excellent indication of exactly how screwed up their priorities are.
    Ren, golden and Kina like this.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,270
    Likes:
    3,676
    Cornwall, UK
    The rules appear a bit ambiguous, referring sometimes to comments being deliberately or knowingly defamatory but in other places not mentioning purpose or knowledge. And purpose or knowledge are hard both to prove and to disprove.

    Better to err on the side of caution, don't you think? Even if Tania was found innocent of libel or defamation, she really doesn't need another battle, as she can't even keep up with those she already has.

    Some of the named individuals may just be following instructions from their seniors.
  9. Kina

    Kina Moderation Team Lead

    Messages:
    5,260
    Likes:
    3,621
    Ontario, Canada
    It's beyond me why you are even discussing that Tania has committed any sort of libel or defamation. There is nothing in this thread that even comes close to it. She has not broken any rules as set out by Phoenix Rising. If Tania has any concerns and wants something removed I am sure she will contact me and ask me to do so. I asked her previously if she wanted me to move the thread to a private area just so these SA people wouldn't have access.

    The rule isn't that ambiguous, we remove anything can be construed as libel/defamation. It's extremely difficult to define it because the laws are very loose in some countries and not in others. As far as the internet goes most of the laws haven't been written and generally there have only been a few successful cases (I think one had to do with Sir Simon and monkeys -- just kidding). This really is a moot point.

    The thing about libel/defamation is that if somebody were to be sued, if they win, they get a monetary sum for damages. Do you really think it would be worth suing somebody with little or no income. I think the only prudent thing would be any person/party who felt they are being libelled/defamed to contact us and point out where and why and then we will make a decision. We have had this happen and the posts were removed in one instance. The person in question was never held legally responsible because it's not worth taking somebody to court unless the person is extremely famous and their reputations are in ruins. We have other complaints that were totally frivolous and after a few threats and we didn't bite, they went away.

    There is no point going in this direction. There is no legal issue here. I don't know why people are pulling out the worst case scenarios. Doesn't Tania have enough to deal with? I have followed this thread and the way she has been treated time after time is atrocious and if any thing they should be rectifying the situation rather than threatening to contact Phoenix Rising to tell US that OUR rules have been broken when they actually haven't. All is good.

    @tania -- please let me know what you want to do re: privacy of the thread. I also think this thread might be getting a bit off topic -- let me know what you think.
    taniaaust1, Ren, helen1 and 2 others like this.
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,409
    Likes:
    1,741
    Midwest, USA
    Even if it were a jury trial, I think it would be fairly easy to seat a jury that had never visited PR.
    taniaaust1 likes this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    Yeah I do the same with rotation of sleep drugs when I really need them (I only take those when Im desperate.. I mean really desperate.. I often at times till 2.30am but that doesnt bother me too much (as long as I dont have to get up early... when my insomnia is real bad.. I cant sleep till daylight (that situation I do take drugs). Im on so many drugs here (up to 6-7 prescription I think it is) that I worry about my liver (I had liver issues early in my ME, they thought I had hepatitis at one point but fortunately I didnt). My specialist told me that my benzo a tollerance can happen with only 5 days of taking it. (hence why Im only to take it 2).
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    If I use intials it wont help me remember their names.. my brain doesnt even pick up on memory jogs well. It would stress me out far more if I arent able to get off the horrid abuse people are doing off my chest, if I was made to feel like I had to protect them even throu they are doing major wrong and harming me.
    golden likes this.
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    Feel free to mention her name.. maybe another with ME and issues will see your post who needs a good advocate and will be able to request her. (I think it would help if those who have ME went throu the same good people).
    golden likes this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    Funny you mention him Golden. Thou I arent Christian.. He's an angel I work with when I do spiritual healing.
    golden likes this.
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    Nods.. I myself didnt even now where PR forum rules were, I had to ask Kina the other day.
    golden likes this.
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    Its okay Kina. there may be others in my state who are dealing the same people from the same disablility org (as its the only one here.. all other supports have to get funding throu this one) and it would be good for them to know what they've done to me so they can take action much earlier then I have done to try to get this stopped. I wish I'd known I'd be still fighting them 3 years later, I should of gone legal route over a year ago when they wouldnt refer me for a wheelchair etc back then. I hope my posts will some help to others who are having issues. Surely I cant be the only severe ME person in this state who has had to seek support throu state disability service?

    If there are others.. please contact me as maybe we should do a class action suit against the state service! I would like to do that if there is anyone else. Has anyone else been knocked back by the state disability service simply cause they have ME or CFS? (I know this has happened as my doctor now retired told me others had applied and got knockbacks but I have no idea who).
    golden likes this.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    You are right . its gone quite off topic currently. I could ask you to move it but then maybe people who have been reading this at times wont know where to find it? I also do plan to hopefully it it back on topic (cause I havent been getting to my doctors there isnt currently much going on with treatment but hopefully that will change soon!!).

    I'll leave it to you to decide what to do with it. I prefer it here as it is where I started to post my treatments and are going to go back to them (just this crap is really getting in the way but I dont want to have different threads everywhere as it becomes too hard for me to follow my own threads and I forget them).
    golden and Ritto like this.
  18. golden

    golden Senior Member

    Messages:
    1,717
    Likes:
    967
    Clear Light
    Me too :)
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    Update

    Ive increased Florinef so now Im taking 2 and a half pills (I hate doing this without a doctor monitoring as I know they should be). Ive done this increase as I had quite a bad collapse yesterday and was then stuck in bed rest of yesterday and nearly all day today too. (I'll just keep increasing it each time I have a very bad collapse..worst then normal).

    It wasnt hot yesterday but my sister visited and I made a quick lunch (I was making lunch for myself anyway when she phoned so it wasnt much more of an effect to do a little bit extra). Unfortunately thou, thou it was only roast and roast veg (many not peeled) I did (the easiest thing I could of cooked),.I felt very drained after that. I should of layed down at that point but as my sister was seeing someone I know and like and who I havent been to her house before.. I wanted to go to visit too.

    So I semi layed the whole time on this others lounge while we chatted but I still really wiped out (probably the affects from making lunch still kicking in). My other sister turned up and the one who we were visiting. jer hubby needed help outside and my nephew got asked to help (help push a boat into a shed) but my nephew was horrid and wouldnt help the other at all, so my CFS sister went out to help but was having issues so I couldnt help myself... I got up to help them too (yeah stupid move). I didnt even make it to the boat thou.. I collapsed only metres outside the house door and couldnt get up again.

    I knocked back offers to help me inside as I was scared i'd fall throu the big windows by the path (even when people are helping me to walk cause I start wobbling so badly and spasms they often loose grip of me). So I just stayed laying on the cement by myself for maybe half an hour..then the others husband came and offered to help me inside.. he's a big guy so I said yes at that point. We only made it 2 metres till he lost his grip on me as I started badly spasming, my arms going everywhere (like almost epilespy) and hit the concrete near the doorway (still not inside). Me falling and shaking on he ground like that freaked out the toddler so then they were dealing with her too cause my spasms/jerking was scaring her. They ended up getting me a pillow and I had about an 1hr or so sleep on the floor thou it was very noisy with the young children running around me but I was soo terribly exhausted by doing this visit and in such a bad way thatI just fell asleep where I had collapsed the second time. (I wish I could get this filmed one day.. it would be quite a eye opener for those who dont understand how sick we get. Im sure it would really shock people who dont know about this illness or about POTS).

    When they were finally able to take me home.. of cause I went straight to bed (with my sister helping me get to the bed). I was soo sick that I felt as bad as last time when I was ambulanced to hospital and thought about ringing the ambulance several times last night as I sooo needed a drip but I didnt cause I was scared I could strike a POTS bad doctor and didnt feel well enough to risk this (I would been put into the waiting room only to end up collapsing there again..so thought of going to hospital was as bad as staying home in bed knowing I should of been in hospital.

    I was so weak and drained most today, still feeling badly POTS affected and like I could of done with a drip, stayed nearly all day in bed. Im feeling a bit better now.. I can now walk okay again. So anyway.. I raised my florinef half pill due to this.. I had to do something!! I cant be getting bad enough that I should be in hospital all the time esp from basically just from making lunch and then laying on anothers lounge chatting for 1 hr.
    .......

    Postiive has come out of this thou as my family has never seen me that sick..they've never seen me collapse like that (as I always try to pace well around them and they usually go off and leave me when I say Im feeling sick so they never see my decline). They were shocked to see how bad I got with seizure activity and collapse and not able to recover from that.

    They've phoned me today to check up on me and also appears that one of my sisters is actuallly going to phone DisabiltySA. (funny that they all had medical training, I had 2 nurses and 2 carers....so when I collapsed so everyone was making jokes about being able to look after me .. but today Im getitng phone calls from them saying you really need to see another doctor to find out what's wrong (shows once again they do not understand ME severity). they are finding it hard to understand that I just cant go to any GP for severe ME and POTS.

    I had a talk with my sister on the phone and she said she would of gone to hospital with me after seeing how bad I was (I didnt know that at the time or I would of told them that they could ring the ambulance) oh well. next time. It would probably help things with disability services if Im ending up in hospital more instead of avoiding it when I should be there just as I cant handle dealing with bad doctors when terribly ill if that happens.
    Last edited: Mar 23, 2014
    Valentijn, MeSci, Ritto and 1 other person like this.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,789
    Sth Australia
    I had a migraine this morning and afternoon, the light when we went shopping really hurt my head more.. fortunately okay right now (Im dosed up on painkillers and yet to recover properly to my latest baseline from Saturdays bad collapse).

    Ive been ringing re legal advice and have a legal person coming out on Thursday more to discuss things with me.

    I found out about where elsewhere I could contact throu the Equal Opportunities person who's currently dealing with my case as Im urgently needing things fixed as I just get worst and worst my health can not afford me hanging on.. just still waiting to see if DisabilitySA will do the right thing.. and he's got to stay impartial to deal with the case (He's a nice guy, I wouldnt be surprised if he's well aware of ME/CFS and the issues around this illness). He said my advocate from the disability and complaints service who I was about to ring (I had lost her phone number again and was looking for it).. has rung him and said she plans to ring me tomorrow (or the day after).

    I also discussed my case with a solicitor elsewhere on the phone... trying to find out all the things it would come under eg medical neglect.

    I had a panic today as I found a letter from HCSCC and realised I hadnt responded back by the deadline... my time to respond has now been extended to another month. (Im going to get my disability advocate to help me with the response but we need to work out the how are we going to meet issue again if its just her and I meeting with no one else.. as it takes two others to help get her with her disability into my house).
    Last edited: Mar 25, 2014
    Valentijn likes this.

See more popular forum discussions.

Share This Page