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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Australian Govt jobaccess ME "CFS" help advisory site

Discussion in 'General ME/CFS News' started by Allyson, May 29, 2013.

  1. Allyson

    Allyson *****

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  2. alex3619

    alex3619 Senior Member

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    Thanks Allyson. I have not read the whole thing, and there are presumptions in the writing about severity and course of illness, but I had a brief look ... and saw no mention of CBT/GET. I wonder if its buried in the fine print, or if they actually read the data and realized there is no good evidence that either improves functional capacity.
     
  3. Allyson

    Allyson *****

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    Good pick- up Alex, that would be good news.

    yes; there were criticisims of it of course but it is a start.

    cheers
     
  4. taniaaust1

    taniaaust1

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    Wow.. surprised to see that. Its interesting strategies but really shows just how much our government wants us to be able to get back to work. I like the (sensible) parts with strategies to deal with working with certain symptoms we have.

    "Focusing Attention" http://jobaccess.gov.au/node/11700

    One of the recommendation is to basically isolate so we dont get distracted.

    "Coping with seizures and black outs at work" http://jobaccess.gov.au/node/11685

    wow.. the seizure and blackout advice I find crazy.. as they once again recommend the person be partitioned off as they say those with blackouts and seizures have concentration issues.. Wow!! how sensible is it to recommend that someone who has seizures is closed of in cubicles? This doesnt sound sensible to me at all as what if they have a serious seizure and no one then knows due to the person havent being isolated.

    "Remembering Tasks and Activities" http://jobaccess.gov.au/node/11778
    a part from the above link

      • haha.. seriously.. what companies would want to employ us if we need a "buddy" to help us throu our work. I do thou think its great they have ideas to help those who want to work to be able to use thou i wonder if they will use this as an excuse as "why arent we working?" .. when there is strageties like this out there.
        "Managing sensitivity to heat"
    http://www.jobaccess.gov.au/advice/jobrequirement/managing_sensitivity_to_h
    They even go as far as recommending "
    Separate temperature controls also allow greater flexibility for certain areas of the workplace to have different temperatures, making it possible for many people to have their needs met with regard to temperature:"

    I havent as yet looked throu the work recommendations yet for the rest of our symptoms.
    ...............................

    What companies really would follow all the recommendations such as this so a ME person with these symptoms could maybe work? Realistic? Obviously a lot of thinking has gone into getting us back to work. What I really would want to know is how do I improve my stamina and PENE from working, how does one keep managing to do? Do they recommend us being sent home for naps every couple of hours? (I havent found that part yet).

    Ive been throu so much of the gov bullshit around Disaiblity Job Seeker place and to what lengths they will go to to try to get you back into work that I dont trust the whys of this being put out. I got forced into a subcontact work at one point when I couldnt really work at all (and was made so much sicker due to it. Ive never recovered from what they made me do years ago. Disability place which helps you with work, makes you sign contacts saying you will do so many hours work per week and then you will be threatened of being cut off by Centrelink when you dont achieve the goals).. the bullshit of "you can do this as its choosing your own hours so you can work around your illness" (their words) and they expect you to be able to catch up later in the week.. but as all of us with ME know, its near impossible to ever catch up.

    Stay clear of disabilty job places set up to supposely help us, even if you do want to work as I did at the time ..
    .....

    hey thou I didnt see it under the CFS part (it was linked to a CFS part) they even have management stragities for those who have allergies or MCS.. "
    For people with allergies, personal protective equipment is available to prevent breathing in harmful dusts and airborne pollutants:
    wow.. management strageties to light sensitivity issues too.. they have thought of near everything so we dont have an "excuse" (some would say), not to work
     
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  5. alex3619

    alex3619 Senior Member

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    Yes, a lot of the issues appear to be a failure to understand the disease, but even so its a vast improvement over something like what we hear from the CDC. Other issues like the buddy system are just impractical. I could work if they also hired a buddy to do the work for me ... seriously?
     
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  6. taniaaust1

    taniaaust1

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    The only place Ive seen CBT mentioned and its only mentioned once, is under the
    "Dealing with stress and psychological demands" (which is only a little part of the whole thing on CFS and its strageties

     
  7. taniaaust1

    taniaaust1

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    Yeah definately an improvement over the CDC!!!

    Hopefully this new Aussie stuff will help Sth Australia start to move forward and more in line with the other Aussie states as far as ME/CFS goes. (I wonder if I could use what is written there to show the stupid ones here that ME/CFS people do have issues with the heat). They still in SA have heating and cooling rebates not available to those who have ME/CFS here thou MS and other illnesses can get it.
     
  8. taniaaust1

    taniaaust1

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    No the buddy isnt to do the work for you but to keep reminding of you what you are forgetting and to help you to stay on task etc. :rofl: it brings funny visuals to my mind of each of us having our own buddy standing there, who's role is to watch over us. I needed a buddy when I was doing housecleaning work still as I'd move things to vaccum and then couldnt remember where anything went back again or I'd clean a room and forget and redo it all over again (my clients used to have to keep watch and used to have to keep stepping in telling me what I had and hadnt already done).

    I guess a buddy would of also been helpful in my cleaning jobs to clean up the mess I made a times with my balance issues eg I lost balance and due to that knocked over the mop bucket on occassions. So yeah maybe a buddy to clean up after me. Also if I'd had a buddy to drive me to work, I wouldnt have smashed up two cars while trying to drive to work too tired to be driving safely.
     
  9. Art Vandelay

    Art Vandelay

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    From my personal experience, I'm afraid to say the government doesn't even follow these recommendations.

    I was forced to quit my job in the public service recently after being told by the government's doctors that I had to treat my CFS with GET and CBT. They also advised I had to work more hours in the office than I was physically able to do (against the advice of my doctor). This triggered a severe relapse which took over a year to abate.
     
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  10. taniaaust1

    taniaaust1

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    The Employment assistant fund sounds interesting. I wonder if one could apply for a bed in their workplace?

    http://jobaccess.gov.au/node/11726
     
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  11. taniaaust1

    taniaaust1

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    In my case not once surprisely, did any of the gov depts tell me to do GET or CBT.. but maybe I didnt get told to do CBT as I was already having counselling over the stress I was having over trying to work and really failing in that. I was an emotional mess due to it all.
     
  12. Art Vandelay

    Art Vandelay

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    That's very surprising! I saw 6-7 government doctors (mainly occupational physicians and psychiatrists) during the period I was working and had CFS and every single one of them recommended GET and CBT.

    As an aside, one of the psychiatrists asked me if I had been bullied at school, abused as a child, suffered from bad relationship breakups etc. He explained to me that these experiences "cause CFS".
     
  13. alex3619

    alex3619 Senior Member

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    Which is where it belongs. CBT can be useful to deal with stress for some patients, but not to treat CFS.

    The more I think about it, the more I think the buddy idea is dangerous. Sure, if all you have is inattention then it might work. However when I am losing track I am on the verge of relapse, unless its just because something has distracted me. If I relapse repeatedly then all my performance declines, and can decline for years to decades. Very bad stuff.
     
  14. Goodness to M.E.

    Goodness to M.E.

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    'As an aside, one of the psychiatrists asked me if I had been bullied at school, abused as a child, suffered from bad relationship breakups etc. He explained to me that these experiences "cause CFS".

    This sounds like the same Dr I saw in Adelaide who stated women get CFS (I have M.E.) because women are more likely to be sexually abused than men! Given that 1 in 5 kids are abused, pretty poor effort to explain the origins of CFS me thinks....I cant be bothered with mainstream doctors in Adelaide because they dont even know the difference between CFS and M.E. and dont want to know and how dare we challenge them...they are the Dr.!
     
  15. alex3619

    alex3619 Senior Member

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    Its pure psychobabble from that doctor. There is ZERO evidence abuse etc. causes CFS. Its an unproven hypothesis. There is some weak association if I recall correctly, but association does not demonstrate causation and these studies are typically very badly designed. As a consequence their very weak findings cannot be generalized.

    There may be a timing thing here. I never heard of GET for CFS when my docs saw me in 1987. On the other hand I did not get diagnosed till 1989, under the Holmes criteria, prior to that it would have had to be ME. It may be that attitudes have changed, and unproven psychobabble is now uncritically accepted in medicine. That is a bad sign if it is true, and an indictment of the entire medical profession.

    I am at the point, and the science is at the point, that official complaints to the medical authorities on these issues are becoming necessary. The next doctor who tells me this rubbish will get officially reported, and if the AMA dismisses it I will start a campaign against them unless they have very good grounds ... which I highly doubt would be the case. This nonsense (and nonscience) has gone on long enough. We need to send a message to doctors: obsolete discredited psychobabble is not acceptable, ever, for any reason! It might have made sense in 1913, but it doesn't belong in 2013.
     
  16. alex3619

    alex3619 Senior Member

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    The big thing is this: if mild ME is managed well there should be no chronic fatigue at all. Chronic fatigue is not the mandatory symptom. Its not even important, its a secondary consequence of the real issue: massive, rapid and prolonged fatigability and exacerbation of symptoms. Most docs are half a century out of date on this issue.
     
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  17. Goodness to M.E.

    Goodness to M.E.

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    I agree Alex, I had an appointment with a Dr at a local memory clinic and by the time I got to see him I was starting to crash. I told him I had M.E. and gave him information about it and then he proceeded to ask me about my psychiatric background. I just laughed and walked out. Tomorrow I have an appointment for a MRI and when I spoke with the clinic today I advised I had M.E. they had no idea what is was so I said I would provide information for them as it is a neurological disease that affects the brain and would have an impact on their assessment of the MRI.......no wonder we struggle with medical support. The good thing is I applied for DSP (currently unable to return to 30 year career in government) and within 4 days they overturned the original rejection of my claim. Given I've written reports all my working life, I think the drafts I did for my 2 doctors saved the day!
     
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  18. biophile

    biophile Places I'd rather be.

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    Valentijn likes this.
  19. Esther12

    Esther12 Senior Member

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    Seems pretty good to me, considering e difficulties of saying anything about CFS and work, and how bad a lot of the things govt's produce are.

    Considering the noises coming from Australia about disability benefits though, and aylward's involvement, I'd be worried that it could just be talk, preparing the way to screw people over. Still, in and of itself, it seems fine, and hopefully the reforms in the UK are recognised as a f-up rather than a model to be followed before more people are harmed by Aylward's BPS work.
     
  20. Art Vandelay

    Art Vandelay

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    This doctor was also in Adelaide, so it could be the same guy. That said, there are so many poorly educated, uninformed and generally clueless doctors that there probably is more than one doctor in Adelaide who believes this sort of garbage.
     

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