Research

Leave a comment Posted on June 24, 2014 Patient Talk, Research

Should people with autism (autistics) be described as disabled? Please share your thoughts at our blog post and poll!

Autism Spectrum Condition

“If you write about the mentally ill – people who suffer a short breakdown, maybe, or long periods of crippling stress – or say that those who must cope with autism, depression or schizophrenia all their lives are “handicapped”, you will be hammered.” So says Nick Cohen in a recent blog post in the UK’s Spectator magazine.

Now I think Nick Cohen is a great journalist and agree with him on a lot of issues but and this is a bit but here I’m really convinced he is right. So what do I mean?

Now my son , who as regular readers will know , is on the autistic spectrum certainly had a learning disability which is part and parcel of is ASD. I’d accept that not all autistics have a learning disability but many do and many others show symptoms of disabilities in other areas of their lives. So I feel no big concern to described my son as a person with disabilities. Because he is.

So I would not hammer anyone for describing him as such.

That said I really don’t like the word handicapped at all. What I suspect Cohen may be thinking is that many of us in the autism community, and I would guess this goes for people in the various different mental health communities, don’t feel that autistics etc are “less” as people in any way. They are just different. Their humanity is not lessened by their condition.

That of course is just my view and I’m really interested in yours.

So I would love it if you could take part in the poll I’ve set up below.

It would be brilliant if you could use the comments box below to add any thoughts you may have on the subject. I’d love to read them and sure our other readers would as well.

Thanks in advance.

1 Comment Posted on June 18, 2014June 18, 2014 Fibromyalgia, Pain Management, Patient Talk, Research

Looking for people with lower back pain or fibromyalgia to take part in an opinion survey. You might win $50.

University of Colorado Denver

This is the third in a series of survey invitations by Jessica Payne-Murphy, of the University of Colorado Denver, to participate in a survey on pain. She is, in particular, looking for people with lower back pain to take part. If you do participate you will be entered into a draw and you could win $50 worth of Amazon vouchers.

Please feel free to share with you friends and family.

As they say “If you aren’t in you can’t win”!

Payne Murphy writes “If you have already completed this research survey, thank you and there is no need to complete this again.

You are invited to take part in a research study: Acceptance-Based Factors in Chronic Pain: A Comparison Between Fibromyalgia and Low Back Pain Patients in an Internet Support Group Sample (COMIRB No: 13-3263). This study is being led by Jessica Payne-Murphy, M.A. at the University of Colorado Denver.

The study involves answering a series of online questionnaires designed to increase understanding of chronic pain. We are inviting participants (age 18 and older) who have been and are currently managing low back pain or fibromyalgia for at least 3 months to complete an online survey. It is anticipated that this survey will take approximately 30-45 minutes of your time to complete.

If you choose to participate in the study, you will have the opportunity to enter a drawing for one of up to ten $50 Amazon.com or Amazon.eu gift cards.

In addition, we request that you forward/share the survey link to other individuals with chronic low back pain or fibromyalgia who may wish to participate in this study so that they may have the opportunity to assist us in gathering information about chronic pain and online support groups.

Please click on the following link if you are interested in learning more about the research study”

If you have any questions or concerns, please contact me

Thank you!

Leave a comment Posted on June 6, 2014June 6, 2014 Autism, Patient Talk, Research

Autism research. The Irish Centre for Autism and Neurodevelopmental Research (ICAN) are looking for parents of children with Autism to help them with a new research study. Drop round and find out more!

Irish Centre for Autism and Neurodevelopmental Research

Sian Williams of The Irish Centre for Autism and Neurodevelopmental Research (ICAN) has asked us if we can help her locate parents of children with autism to take part in some research into anxiety and autism.

You can have a look at their web site here.

‘Does your child experience anxiety? The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway are looking for parents of children and adolescents with ASD, aged 6-17 years, to take part in a study. The study will be looking at the effect of anxiety on young people with ASD in terms of challenging behaviour, sleep problems, and gastrointestinal issues. Even if your child does not present with symptoms of anxiety, you are still able to take part, as it is important for us to understand the effects of co-occurring anxiety by including individuals with and without anxiety problems. If you wish to participate, please use the link below.’

https://docs.google.com/forms/d/1guU7-AQYiBdi0biiFXdqizQyCvhBM5VwHV0QWaFX3r4/viewform?usp=send_form

Leave a comment Posted on June 5, 2014June 5, 2014 Autism, Patient Talk, Research

Autism Talk News Flash – Possible high exposure to male hormones can lead to ASD in males.

A boy who developed autism

So suggests some recent research from form the UK’s University of Cambridge. Dr Michael Lombardo and Prof Simon Baron-Cohen have conducted research which suggest that high exposure to testosterone ( and some other hormones) in the womb can lead to a diagnosis of ASD in later life. However this applies to boys rather than girls.

According to Baron-Cohen this is one of the first non genetic markers which has been so far identified.

But this does not mean that presence of these hormones will provide a pre-natal teat for autism or will blocking these hormones lead prevent the development of autism. The hormones are necessary for the development of a healthy foetus.

You can read up on the research in more detail at the BBC web site here.

Leave a comment Posted on June 2, 2014June 2, 2014 Arthritis, Fibromyalgia, Pain Management, Patient Talk, Research

Win $50 in a draw for taking part in some Fibromyalgia or Pain research for University of Colorado Denver.

University of Colorado Denver

The University of Colorado Denver is running some interesting research with people who suffer from various types of chronic pain including fibromyalgia. Jessica Payne-Murphy, who is running the survey, has written a short post outlining the scope of the study!

Payne-Murphy writes “You are invited to take part in a research study: Acceptance-Based Factors in Chronic Pain: A Comparison Between Fibromyalgia and Low Back Pain Patients in an Internet Support Group Sample (COMIRB No: 13-3263). This study is being led by Jessica Payne-Murphy, M.A. at the University of Colorado Denver.

If you choose to participate in the study, you will have the opportunity to enter a drawing for one of up to ten $50 Amazon.com or Amazon.eu gift cards.

Please click on the following link if you are interested in learning more about the research study:

https://redcap.ucdenver.edu/surveys/?s=qtaNLcWATj

If you have any questions or concerns, please contact me at https://www.facebook.com/UCDChronicPainResearchStudy?ref=hl