The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Dr Ian Buttfields talk 3rd Dec 2011

Discussion in 'General ME/CFS News' started by taniaaust1, Dec 3, 2011.

  1. taniaaust1

    taniaaust1

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    Sth Australia
    (note this has been filmed so I assume will become publically available)

    my appologies for if ive misunderstood or confused anything below. I took notes but that dont mean I havent confused something.
    ......

    The meeting was held in a manner to make it easier for those with ME/CFS. They always have a rule no perfumes to be worn.. couches were provided so I was able to lay and watch the lecture, attending without having a collapse :) . (no one ended up having to carry me out of the building).

    Dr Ian Buttfield is a retired ME/CFS specialist but who still gives occassional talks and also yesterday kindly put out an offer to train GPs who want to learn about ME/CFS in Sth Australia. He's asked the SA ME/CFS society to work with him and send any willing doctors his way.

    (thank you, thank you Dr Buttfield.. that is one big area I'd wanted the SA ME/CFS society to help do something about, doctor training/poor doctors, and had put a request to that to person manning their phones in the past only to be told that I needed to have "patience" and that things are slowly changing.
    There seemed to be little understanding that some of us cant even look after ourselves including myself and could be at a risk of death due to doctor naivity of how bad we can actually be. So hearing Dr Buttfield ask for the society involvment to help him train doctors was like a prayer of mine was answered).

    This was the first time Ive heard him speak and he probably wasnt at his best as he was ill with a virus but still came and did the lecture, so a big thanks to him.

    I found him both good as well as not so great as far as ME goes.

    The positives of his lecture was.. he pushed the need for doctors to try to treat the patients issues eg drugs for sleep, pain etc. He also understood well that most doctors need far more education in ME/CFS and need to be taking their patients seriously. He seems to be a very caring doctor towards ME/CFS peoples.

    The negatives were.. which came out mostly during the question and answer time and I thought showed some lack of understanding.
    Someone asked if tilt table testing was any value and he firstly said it wasnt. From his comment, I was clear to me he seemed to have no idea at all about POTS at all or the treatments which can be tried for POTS people.
    Someone else asked him a question about severe fatigue and he seemed to think that part of things was helped by treating depression of the illness (he seemed to assumed ones with this symptom had coexisting depression at the same time). He didnt also seem to really understand the fatigue of the person who asked him the question and what she was saying went right over his head. (Its hard for anyone who hasnt had this illness even the specialists to understand us).
    He said there is no immune abnormalities in ME/CFS (he seemed completely unaware that there is follow up studies in that area going on in Newcastle etc).

    Anyway. here's some notes I made from his talk (when i wasnt running back and forth to the loo, I missed a lot due to my bladder being very disruptive due to the amount I was having to drink).

    * A little exercise is good but take a lot of care to not over do it at all

    * When you see a new doctor, help them to understand the condition by "describing what it means to you". eg how it is affecting your life .. cant go out to dinner with friends etc

    * Medications for ME/CFS
    -Diazepam is good for lessening muscle pain
    -serine (study which may not have been published, wasnt finished?.. tests showed there was a significant decrease in this in ME/CFS. Those who supplement it, 50% get benefit. 5% think its wonderful. (something about being able to get from David Shephard... no one ask me who that is as I dont have a clue.. i assume he's a doctor here)
    -Anti-inflammatories are good for deep "boney" pain
    -Valium Can take up to 4 5mg pills per day max for muscle pain (hang over effect from those usually only lasts a few days or so).
    -Morphine only helps boney pain and not muscular pain
    - (I didnt clearly hear the medication name.. Abanza?? Bebanza?? tricycliant. Can help sleep
    (I missed the rest of the stuff on medications).

    *He spoke about studies (currently being done?) 80% of ME/CFS people have bowel problems. He went into the possibly that ME/CFS could be something to do with issues with changes in the bowels. Bacteria disorder. (he mentioned Henry Butt)

    *He spoke on his own ME/CFS theory of it being to do with damage to cell mebranes either the cell wall or the other membranes within the cell.

    *Whatever you do or try, take care not to make the ME/CFS worst

    Great things currently taking place in Sth Australia
    *There is a 1st draft which has been done based on an Aussie patient website on MCS. People in Sth Australia (him?? and others) are putting together a booklet on MCS for a doctors guide ect. Its going to take at least a year before this booklet is completely finished.

    *The Royal Adelaide Hospital is setting up an special area for those who have MCS as currently many with it cant stay in hospitals due to chemical sensitivity etc. (my brain didnt comprehend if this was like a special hospital stay in room or like an actual clinic for MCS suffers which is being set up).
    ........

    Unfortunately I never got to ask him some personal questions as he left very soon after he gave the talk.
    ...

    Ive spoke to a couple of people on the ME/CFS SA societies committee? (a couple of the people who seemed to be organisers) about the need of having a help page on the various services for us with phone numbers at the website.

    Ones who have severe ME just arent up to seeking out such info for themselves and it often takes years to find out ourselves about the services out there which could be helping us. Its only now that my head is better then it was, that Ive been up to searching for all the info on this and pushing orgs and finding out more. They've said I can get the info together and send it in.
    (Ive only got some info on this currently so if anyone is in Sth Australia and knows services out there which we may be able to use that I may not currently know about, please pm me of them to add to what Im trying to get together to help the more severely disabled of us who needs various help. Thanks).
     
    ComtesseDeLaCouche likes this.
  2. Glynis Steele

    Glynis Steele Senior Member

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    Newcastle upon Tyne UK
    Hi Tania,

    Thanks for letting us know how this talk went. I think when Dr Buttfield mentioned the above, he might have been talking about the follow up study on d-lactic acid, which comes from gut bacteria, and causes neurological changes that are said to be strikingly similar to CFS. Dr's Neil McGregor and Henry Butt are the supervisors of this study. Here is the Ethics Application which explains it.

    http://sacfs.asn.au/download/Lactic acid study 2008 - Ethics Application.pdf

    The good news is d-lactic levles can be normalised, and when this happens, the neurological changes are reversed.

    Glynis x
     
  3. taniaaust1

    taniaaust1

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    Yes.. it is probably that study he was refering too.
     
  4. gregf

    gregf Senior Member

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    Sydney Australia
    Great report thanks Tania.

    And its great to hear this sort of thing happening now in Aus.
     

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