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TOPIC: Survey of MCS

Survey of MCS 4 years 7 months ago #1

  • Jodie
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I've been asked to forward this

...an email from Planet Thrive about a survey of MCS and the use of forums as below.

Hello Planet Thrivers!
I was recently contacted by Dr. Tarryn Phillips, an academic in legal studies at La Trobe University, Melbourne, Australia. Over the past eight years, Dr. Phillips has conducted research into multiple chemical sensitivity/environmental illness, talking to chemically sensitive people, their families, doctors, lawyers and concerned community members in Australia. Her work has been particularly about the challenges that people with MCS face in seeking recognition from medicine and the law, and in receiving social and financial support. Dr. Phillips believes that the more we understand about the social elements of having MCS, the more we can improve society’s response to emerging and uncertain conditions.

I am writing to invite Planet Thrive members with MCS/EI to participate in an online survey about the use of online forums in the MCS community. The project has been approved by the La Trobe Faculty of Humanities and Social Sciences Human Research Ethics Committee. Given the lack of official support felt by people with MCS, many turn to online chatrooms and support groups for advice and assistance from fellow sufferers (and experts) around the world. Yet, as we all know, there can be disagreement in these spaces about the most effective forms of treatment, particularly with regards to cognitive behavioral – or neural retraining – therapies. In undertaking this project, Dr. Phillips' aims are to: 1) Better understand the function and potential of online forums as a space for people with contested conditions to seek support and enter into dialogue with other sufferers; 2) Research the nature and implications of internal debates within environmental health communities about medico-scientific controversies ; 3) Explore the impact that these things can have on the illness experiences of people who suffer from conditions with contested causes.

Your perceptions and experiences will be extremely valuable for informing this research. Should you agree to participate, you can access the online survey here: jfe.qualtrics.com/form/SV_6J1NgkwBq84vlI1


More about the survey:
Everyone’s participation will be anonymous. If anyone refers to specific forums in their answers, the answers may be linked to particular sites they have been involved with. However, their identity will remain anonymous and their answers will be attached to a false name (pseudonym) in any publications arising from the study. The data obtained from the survey will be stored in a password protected computer at La Trobe University, which will be accessed only by Dr. Phillips and a Research Assistant on the project. The data will be kept for 5 years, and will be destroyed after this time. It is anticipated that the findings of this research will be published in academic journals, books and presented at conferences. A summary of the study findings will be made available on the relevant online MCS forums for distribution when the data collection has finished, which is by 31st of December, 2015. If you have any further questions about the study or if anything is unclear, please feel free to contact Dr. Phillips directly at:

Dr Tarryn Phillips
Legal Studies
School of Social Sciences
La Trobe University
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

More about the researcher:
If you want to know more about Dr. Phillips' research, her research profile can be found here: www.latrobe.edu.au/humanities/about/staf...file?uname=TPhillips
Last Edit: 4 years 7 months ago by Jodie.
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Survey of MCS 4 years 7 months ago #2

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hmmm.. I went thru that, slightly concerned it kept going on and on and on about Gupta brain retraining. And v vague questioning which would elicit answers which will wander all over the place... I'd be extremely surprised if she make a published paper out of that, way too ambiguous & too heavily influenced by the Gupta questions.
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Survey of MCS 4 years 7 months ago #3

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Thanks for posting Jodie!

I see your point about the focus on Gupta Amygdala Retraining - but then it does seem to have genuinely helped a LOT of MCSers. Research in social sciences and law does tend to lean heavily on qualitative data (i.e. subjective) so survey questions used for data gathering are usually intentionally very open-ended in order to elicit as much information from participants as possible.

Prof. Pamela Reed Gibson has done a lot of great research at James Madison University in Virginia, USA., that has helped the MCS community greatly and her work is in a similar vein - so I wouldn't write this off just yet.

Re: Gupta - The theory behind it is sound and the limbic kindling / central sensitisation model of MCS and other invisible illnesses such as chronic fatigue syndrome (ME/CFS) and fibromyalgia has been studied a lot in the past few years and results have strongly backed it up. Ashok Gupta obviously needs to make a living like everyone else so this may be the main reason why information about the Amygdala Retraining techniques is a bit thin on the ground unless you purchase the DVDs. I know also that a big part of the process is to switch off from 'illness talk' which is perhaps why you don't see many people openly discussing the ins and outs. I've had a lot of people I trust and know were very ill with MCS tell me it works though!
If you are going through hell, keep going - Winston Churchill
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Survey of MCS 4 years 7 months ago #4

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Yes, I know it works for some, (tho didn't do anything for me). I also know a lot of folks with MCS feel there's a serious push - especially in the US - for the chemical manufacturing giants to put a big effort into the message that this disorder is totally psychiatric - nothing to do with the terrible effects of overdosing the environment with toxins; that those companies will try hard to get that message thru and that limbic retraining should be the standard treatment (& probably psychiatric drugs if that doesn't work, in fact I know of those who have been forcibly treated with such drugs which made them far worse). So I get a little suspicious when a study seems to try so hard to find out what I think about Gupta without much mention of anything else, when we all know MCS is multi-headed beast.
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Survey of MCS 4 years 7 months ago #5

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Oh yeah, the chemical giants have been at that for years, using propaganda under the guise of science to underplay MCS and the effects their products have on the health of the public at large. You're also right that they have been trying to characterize MCS as psychiatric.

The thing is though - there is actually no such thing as a 'psychiatric disorder'. Psychiatry is not based on science and is not what can be classed as medicine. Mind (or brain) and body are not separate entities - depression is systemic medical condition for example. It involves dysfunctional immune and endocrine responses and increased oxidative stress (to name a few factors) - just as MCS does. The treatment approach advocated by Ashok Gupta and others is not 'psychiatry', it's mind-body medicine that involves techniques proven to beneficially down-regulate hypersensitivity of the immune and nervous systems and restore homeostasis to the endocrine system. Certainly not a cure-all but a good start.

Of course, if the chemical companies cared about producing products that were not detrimental to human health and the environment then we wouldn't be having this discussion! :-)
If you are going through hell, keep going - Winston Churchill
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Survey of MCS 4 years 7 months ago #6

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So true they are not separate entities, yet the received opinion still seems to be that they are don't you think? Which is why the chemical giants can put about that it's all in your head. I don't know how the general medical community views the mind- body connection these days? Certainly I've never been told I'm deluded, & my zillions of tests were for all physical symptoms - if they thought I could be helped by CBT or relaxation or whatever as well as meds they would have mentioned it I suppose.. so in my case anyway they were not interested in training my mind to influence my bod :) There are lots of conditions - IBS & insomnia just to name a few which I think cd be helped by some sort of brain training, but patients are given pills instead. Maybe its too difficult to quantify results from such therapies - its not like you can measure input the same way as you can with a couple of pills, so they don't get the support they deserve. Or maybe its just harder work than a pill.


btw someone said to me other day "None of Freud's theories has ever been scientifically proved" - which is sort of what you just said - didn't know that.. ! :-O Could all be total hogwash then :)) how come everyone took him so seriously.. *wonders* ...
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