Saturday, 12 May 2012

FMSSAS eNews 12.05.12

Greetings on this Fibromyalgia Awareness Day!
 I hope you remembered to wear purple.  Apologies for putting the wrong date on last week’s eNews.  I must have been anticipating the Bank Holiday!  I hope you enjoyed Monday.  I did.  The Launch Lunch for the ME, CFS & FM Recovery Association went well.  Quite well attended, and interesting.  The advocated holistic approach to recovery is to be applauded but time will tell how it works out in practice.  Further information is on their website  There is to be a conference in November which I have signed up to attend.
70.  If God had meant for today to be perfect, he wouldn’t have created a tomorrow.
May 12: Awareness Day for Fibromyalgia & Chronic Fatigue Syndrome
Awareness is a powerful thing. It's done wonders for some illnesses, such as muscular dystrophy, breast cancer and Parkinson's disease. Awareness means public acceptance and money for research - both of which are desperately needed by those of us with fibromyalgia and chronic fatigue syndrome.
From Clare Palmer on Facebook
9:47am May 12
            Good morning all, I hope you have a positive Awareness Day. This is the 20th ME Awareness Day, started originally by Thomas Hennessy. The Awareness Day now includes Fibromyalgia, Lyme Disease and Gulf War Illness. Unfortunately Thomas's laptop broke yesterday! (Bad timing!!). On the 20th Anniversary I look forward to hearing how he sees the situation now.
            I have mixed feelings about how far we have come. On the one hand we have cases like Karina's, and this is not isolated. People are sectioned in this country, children are on the at risk register in this country also. Parents are made to feel like criminals.
            On the other hand we have a journalist, a high profile journalist that is willing to fight for us all. She is definitely researching for an article on Fibromyalgia, so that is something we can all look forward to seeing.
            Fibromyalgia needs more advocates, needs more vocal charities, in my opinion the charities are doing nowhere near enough to make the difference that is so needed. There is only ONE Fibromyalgia Charity funding research, I find that unbelievable!
            People often think it is better for the ME patients, they have more advocates and it is more recognised. NOT SO!!! ME can be a dangerous diagnosis to have, the psychiatrists have almost a full hold on the treatment of the illness. People are dying! There have been 5 reported deaths in recent times. The numbers are suspected to be far higher. Specialist Autopsies show serious infection within the spine of these patients. And yet all the NHS offers is CBT and Graded Exercise Therapy.
            As time goes on the cases of Chronic Lyme Disease are increasing. More education is needed. There is so much ignorance with this illness. We could find in future years that Lyme Disease is behind all of these other illnesses. The jury is still on on this.
            The patient community is stronger than ever, there is REAL research being funded. Not by governments but by charities. Patients have had enough!!! They are forced to fund their own research, and we will!!!
Worthing Fibro News, May
This and other related articles.
Fibroduck Foundation
The Fibroduck foundation are COMMITTED to funding true biomedical research into fibromyagia, to look for causes and eventually a cure.
All your Gluten-free needs catered for – if GF is what you need
Order gluten-free meals andf snacks online for homr delivery
This site provides an easy way to look for a safe place to eat, stay and shop, helping you to manage your gluten-free or special diet.
If you use an iphone you can get an application for £2.99,  You will be able to search Country, Region, Town and a venue of your choice whilst travelling anywhere in the UK, Europe the USA, Canada and Australia.
You can search for Hotels, Restaurants, Cafes and Takeaways with online shopping to follow very quickly.
Another Phone App - Tracking of Fibromyalgia, Other Pain
The creator of a smart-phone app for tracking chronic pain has announced that fibromyalgia is among the top conditions for which people use the app.
Thyroid UK - Our Government e-petition to Fund research into T3 and/or NDT treatment
Thyroid UK have a petition to sign to encourage more research into Thyroid and T3. Below is info on the petition and the second link is where you sign it.
Info about the petition:
Sign the petition here:
All in the mind? Why critics are wrong to deny the existence of chronic fatigue
An article in the Daily Mail on line that acknowledges ME for what it is and not what the brainwashing, whitewashing authorities would have the public believe.
The Stages of Fibromyalgia
Get Tips to Ease Fibromyalgia Symptoms and the Burden on Caretakers.  A 9 stage article
Car Travel With Fibromyalgia & Chronic Fatigue Syndrome
Traveling in a car when you have fibromyalgia or chronic fatigue syndrome takes planning. That goes for a week-long vacation or a trip to the grocery store.
Because our symptoms can flare at a moment's notice, we need to be prepared no matter where we are or what we're doing. It's more difficult to take care of ourselves when we're away from home. Putting some thought into your trip and having the right things on hand can keep a bad situation from becoming a crisis.
I hope you have found some useful tips and tricks to help you along.  I hope to be back again next week with further goodies for you.  Until then
Keep good and stay as well as you can.
N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.
I also include various awareness and local issues as well as general health considerations.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.
Past issues of FMSSAS eNews can be found at and on a blog at
FMSSAS website is

No comments:

Post a Comment