MS Awareness Week – 5 reasons why we need more Multiple Sclerosis Specialists.

MS Awareness Week
MS Awareness Week

As many of you know by now Monday sees the start of Multiple Sclerosis Awareness Week organised by the UK’s MS Trust. The theme of this year’s campaign is why we need to have more MS specialists. You can read up here about the campaign.

They have produced a brilliant multiple sclerosis infographic which we would love you to share with family and friends.

Thanks very much in advance!

Roll Back Malaria – a great initiative for World Malaria Day!

World Malaria Day 2015
World Malaria Day 2015
Today is , as you may know, World Malaria Day 2015. We covered the day last year here.

Despite dramatic declines in malaria cases and deaths since 2000, more than half a million lives are still lost to this preventable disease each year.

At least three quarters of malaria deaths occur in children under 5. Yet in 2013, only about one in five African children with malaria received effective treatment for the disease, 15 million pregnant women did not receive a single dose of the recommended preventive drugs, and an estimated 278 million people in Africa still live in households without a single insecticide-treated bed net.

“As we celebrate World Malaria Day on April 25, we must recognize the urgent need to expand prevention measures and quality-assured diagnostic testing and treatment to reduce the human suffering caused by malaria,” says Dr Hiroki Nakatani, World Health Organisation (WHO) Assistant Director-General for HIV/AIDS, Tuberculosis, Malaria and Neglected Tropical Diseases.

WHO also recommends that the most vulnerable groups in malaria-endemic areas of sub-Saharan Africa—pregnant women, children under 5, and infants—receive preventive treatment to reduce the risk of malaria infection. Preventive treatments are highly cost-effective, with the potential to save tens of thousands of lives each year. Coverage with such treatments, however, remains low and needs to be significantly scaled up.

The need to urgently address gaps in preventive treatment for malaria is also being highlighted by the Roll Back Malaria (RBM) Partnership, which has issued a global call to action to increase national coverage with preventive treatment in pregnancy.

Parkinson’s Awareness Week 2015 – New research show discrimination against people with Parkinson’s Disease.

Parkinson's UK
Parkinson’s UK

As you may know this week is Parkinson’s Awareness Week. Parkinson’s affects 127,000 people in the UK. With 46% experiencing depression and 62% suffering from anxiety as a result of their condition according to British Charity Parkinson’s UK.

Parkinson’s disease is a neurological condition in which part of the brain becomes progressively damaged over many years. The main symptoms of Parkinson’s disease are:

  1. tremor ( that is involuntary shaking of particular parts of the body
  2. slow movement
  3. stiff and inflexible muscles

So, of course, day to day life presents many challenges anyhow for somebody with Parkinson’s disease but Doctors suggest that insensitive public reactions could be impact on people with Parkinson’s mental health.

Professor David Burn, Parkinson’s UK Clinical Director and Consultant Neurologist, warned:

“It’s devastating to see the added burden thoughtless reactions from the public are having on people with Parkinson’s.

“Patients I see in the clinic are already battling a myriad of neurological symptoms including anxiety, depression and insomnia. The last thing they need is to feel like a zoo exhibit when they step out of their front door.

“It’s a situation where simple kindness and old-fashioned manners can actually have a life-changing impact on people with Parkinson’s. Understanding, patience and empathy can make the difference to someone with Parkinson’s as to whether they feel imprisoned in their own home, or confident to go out in public.”

Research suggested revealed the knock-on effects of public humiliation on people with Parkinson’s. Almost 1 in 5 (19%) who had experienced discrimination and negative reactions would rather skip a meal and go hungry than venture out to the shops, and 15% admitted they feel trapped inside their homes because of these reactions.

For previous coverage of Parkinson’s Awareness Week please have a look at this post here.

Fibromyalgia Awareness Day 2015 is May 12th = Please like and share to show your support.

Fibromyalgia Awareness Day 2015
Fibromyalgia Awareness Day 2015

As you may know by now 12th May is international Fibromyalgia Awareness Day.  We have produced a Facebook Cover to mark the event.  It would be great if you could use it on your profile for just one hour to help us promote the day.

If you have any plans or events for the day please do mention them in the comments box below.

Thanks very much in advance.

The University of Bath is looking for people with Progressive Multiple Sclerosis to take part in a survey. Can you help please?

University of Bath  - Multiple Sclerosis
University of Bath – Multiple Sclerosis

As I never tire of mentioning one of the purposes of this blog is to help promote academic surveys into various different medical conditions. I have a background in medical market research so I take a professional interest in the area.

In fact one of my key roles has been to develop research panels of people with multiple sclerosis. Interestingly (and importantly) almost all the research conducted was with people with Relapsing Remitting Multiple Sclerosis (RRMS). There seemed no interest in other kinds of MS such as Primary Progressive Multiple Sclerosis (PPMS) or Secondary Progressive Multiple Sclerosis (SPMS). If you are interested in the different types of multiple sclerosis and low the various populations fall out please have a look at some of our previous research here.

So I was delighted when Liz Sheils , a Post-Graduate researcher in psychology at the University of Bath, asked us to help with locating people who might help her with research with people with Progressive Multiple Sclerosis.

Sheils writes “The role of positive psychology in Progressive Multiple Sclerosis

You are being invited to take part in a research study to investigate the role of positive psychology in individuals with progressive multiple sclerosis. Please take time to read the following information and to consider whether you wish to take part. Contact details are provided below if you wish to discuss the research further.

What is the purpose of the study?

The aim of this study is to investigate the contribution of positive psychology (such as self-efficacy) to the explanation of anxiety and depression symptoms within progress multiple sclerosis.

Who can take part?

Participants who have been diagnosed with primary or secondary progressive multiple sclerosis.
What does the research involve?

You will be asked to complete a range of online questionnaires. They will take approximately 20-30 minutes to complete.

Do I have to take part?

You are not required to take part, participation is entirely up to you. You can withdraw from the research at any time without giving an explanation.

Will my answers be kept confidential?

All the information will be kept completely confidential and stored securely.

Results will be written up for the purpose of a dissertation and may be published, however no identifiable information will be available to see.

Contact for further information

Thank you for your time reading the research information sheet. If you have any questions or concerns please contact Liz Sheils, MSc Health Psychology Student, via email:

If you would like to take part in the online survey please visit this website:

Thanks very much in advance for your attention.

A Happy and Healthy Earth Day 2015 to all those celebrating today

Earth Day
Earth Day

A Happy and Healthy Earth Day 2015 to all those celebrating today.

Autism Awareness Month 2015 – This is my reason to support Autism Awareness Month 2015 what’s yours?

This is why I support Autism Awareness
This is why I support Autism Awareness

This is a picture of my son John. A wonderful 8 year old boy who was diagnosed five and a half years ago with autism.

The journey since then has been long and hard but with many wonderful moments which have made it so worthwhile.

He is , very simply, the reason I support Autism Awareness Month.

So what do you?

Please share your reason in the comments box below!

Autism Awareness Poetry by Autism Santa

Toys Across America Autism Santa
Toys Across America Autism Santa

As part of our promotion of Autism Awareness Month we would like to share with you two poems by Michael Miller the Autism Santa. At the same time we would like to keep you up to speed regarding his brilliant project Toys Across America. He shares “I run a page on Facebook where my son and I send toys to children on the spectrum all over the USA hence the Autism Santa pen name. As a matter of fact I created an event for this month “Autism Christmas” we are sending out close to 300 toys all to be opened on April 25th. Ok thanks for your time. ” Michael is himself the father of a son who has been diagnosed with ASD. He is also the COO of KultureCity.

You can check out more of Michael’s poetry here.

Meltdowns by Autism Santa

Is it a tantrum or a meltdown.
It’s not an easy thing to know.
Does he really hurt inside.
Or is he putting on a show,

I have dealt with both.
Or maybe they’re the same.
I know not to judge him.
I don’t think this is a game.

Maybe he can’t control it.
This temper I often see.
I wish I could help him.
Or try to set him free.

Rather than adding fuel.
I should step away for now.
But it is not that easy.
I am still learning how.

So for now I’ll tell you this.
It’s not your choice to make.
He is the one who suffers.
I know it is not fake!

Autism Awareness by Autism Santa

I think the world should know.
Autism is here to stay.
In fact it might be growing.
1 in 68 as of today.

So we are asking for a favor.
From you and one and all.
To help us spread the word.
That number will not fall.

So grab a pen and paper.
Or use your Facebook page.
No matter where you live.
No matter what your age.

Perhaps you like to Tweet.
Or sing just like a bird.
Using social media,
The latest craze I have heard.

So go and tell your story.
Or tell it for a friend.
Tell it to the world.
Or who ever will attend.

Tell them about the Spectrum.
Tell it with such clearness.
You can join the cause.
“Autism Awareness”

Michael “Autism Santa” Miller

Sleep Disorders, Fatigue and Relaxation – read our interview with Dr Rob Hicks

Dr Rob Hicks on sleep disorders
Dr Rob Hicks on sleep disorders

Over the last week or so we have been publishing interviews with Dr Rob Hicks on the subject of sleep and related issues. The first , which you can read here, looked at the relationship between diabetes and sleep. The second deals with some of the issues surrounding sleep routines for younger children!

In this interview with Dr Hicks we explore sleep disorders, fatigue and relaxation. Vital to such conditions and multiple sclerosis, rheumatoid arthritis and fibromyalgia among others.

PatienTalk.Org: Ok and moving on from there how would you describe or what is sleep apnoea?

Dr Hicks: Well sleep apnoea is a situation which is often associated with snoring. It is a situation where many, many times in the night for short very periods of time the person stops breathing so a bed partner may notice that the person has temporarily stopped breathing for micro seconds and then the person themselves has a bit of a cough or a bit of a deep breath and they may wake up or they may roll over and go back to sleep. One of the problems with obstructive sleep apnoea is actually that it leaves a person not just tired the following day and at greater risk of accidents but it can actually put somebody’s blood pressure up so it is a contributing factor to heart disease and indeed strokes.

PatienTalk.Org:- Are there other major sleep disorders?

Dr Hicks: Well the main sleep disorder that we come across in general practice is insomnia. A lack of good, refreshing sleep and the underlying cause of that can be a physical problem. It might be arthritis causing pain. It might be a side effect of medication that is being taken for a health problem. It might be noise. It might be too much light. It might be an uncomfy bed or it might actually be an awful lot of worry and that is why the “Good night everyone” campaign from Dunelm is working towards trying to help people find the best way for them as an individual and for them as a family to get a good night sleep and so they can work up refreshed in the morning ready to face the challenges of the day.

PatienTalk.Org: I’ve noticed that you have mentioned fatigue and insomnia go hand in hand. Why do you think that is?

Dr Hicks: What we understand by the process of sleep is it’s a way of regenerating and repairing the body. It’s certainly a time where memories are laid down. It’s a time where basically we give the body a chance to get ready for the next day but if you’re not getting an adequate amount of sleep, and the amount of sleep people need varies from individual to individual so for example for adults it ranges on average 7 – 9 hours a night. For someone in a school, a child in school it’s about 10 hours. For somebody in pre-school so before the age you go to school it’s about 10 – 12 hours. If you are not getting adequate amounts of rest and relaxation than a knock on effect is your body is going to be exhausted.

PatienTalk.Org: Finally, can you suggest any relaxation techniques to help you get to sleep?

Dr Hicks: There are lots of good relaxation techniques. There is deep breathing exercises. There is stretching exercises. There is meditation, visualisation lots of different ways of helping the body relax and unwind and get to sleep but the important thing is that an individual person finds something that is relevant and works for them because it’s not a case of one size fits all. Sometimes you have to try a few things before you come across the one that really works for you as an individual.

PatienTalk.Org: Thank you very much for your time Dr Rob Hicks.

Parents of children with autism – please help a student at Deakin University with some research.

Autism Research Deakin University
Autism Research Deakin University

As you may know one of the missions of this blog is to help promote communication between different parts of the autism community. We think one of the best methods of doing this is via research and opinion surveys in particular.

But I would say that having worked in market research for over 20 years.

So today I am asking you to help a student at Deakin University in Australia who is conducting an online survey with parents of children with autism called Michelle Stewart.

Stewart writes “My name is Michelle and I’m from Deakin University. We are undertaking research looking at the psychological impact of parenting a child with autism who exhibits challenging behaviours. We are investigating a new framework for conceptualising some parenting experiences. We held focus groups with parents last year and findings indicated we are on the right track. In order to explore our framework further and to raise awareness for the importance of parental mental health we are seeking involvement from more parents. This stage of our research involves participation in a ~30 minute questionnaire. ”

To take part in the survey please click here

If you have any questions or require further information, please contact Stewart at:

It would also be great if you could share this page with anyone you know who might be interested in taking part.

Many thanks in advance.