The ME Association want to put forward a better alternative to the current NICE guidelines regarding the treatment and management of patients with ME/CFS. They would like sufferers and their carers to fill in an anonymous survey, so that they can represent sufferers' needs.

Can you help to share your insights by taking the survey?

Go take the survey here…

News from the ME Association (UK)
This is an important precedent in that it will now be very difficult for anyone in a position of authority to claim that CFS (or ME or CFS) can be classified or officially listed as a mental health disorder…

The ME Association recently received an email from the One Click  Group asking for a contribution towards the costs of bringing a legal action for judicial review of the NICE Guideline on CFS/ME. The Association has been asked by members for its view on whether such a contribution should be made.

Source: ME Association

From the ME association:

Please help us raise the profile of ME in Parliament…

Source: ME Association

If you suffer from moderate or severe ME/CFS and have tried to apply for Disability Living Allowance, then chances are that you've probably had to go to appeal in order to obtain DLA. This is what the ME Association has been fighting to change.

In a recent release, the ME Association report their recent findings about the Department of Work and Pensions (DWP)'s latest version of the medical guidelines.  The MEA's aim - for the guideliness to be:

(…) "free from psychiatric bias and will properly reflect the spectrum of ill health and disability that is experienced by people with moderate or severe ME/CFS"

– ME Association, MEA responds to Version 10 of the DWP medical guidance, 11 July 2007

Unfortunately, it seems that there is still much more work to be done:

"We fear that this new guidance is going to make the current unacceptable situation even worse for people with moderate or severe ME/CFS..
 
We cannot therefore endorse the new medical guidance."

– ME Association, MEA responds to Version 10 of the DWP medical guidance, 11 July 2007

Thank you to the ME Association for their perseverance in fighting for moderate-to-severely affected sufferers to give them the fair entitlement to the DLA they deserve.  Keep up the good work…

Can you help spread the word by telling other sufferers, your friends, and family about Sleepydust? 

Through it's various web pages, ezines, course, videos, and audios, Sleepydust continues to help sufferers and their friends and family, all around the world. If you have found the information on Sleepydust helpful, I would be very grateful if you'd consider telling others about it.

I built Sleepydust because I wanted to provide people easy-to-understand information about Post Viral Fatigue Syndrome, M.E., Chronic Fatigue Syndrome and Fibromyalgia. And moreover, to provide hopeful realism to sufferers who have lost hope of ever improving their quality of life. Because it is my utmost belief that there certainly is hope.

Can you help to spread the word about Sleepydust?

More on Want To Support Sleepydust? Here's How!

Do you have a MySpace page? A blog? Maybe you run a web site or a forum?

Now you can help to spread the word by hosting the latest news on your site. Just click on the link that says 'Grab This Headline Animator' below…

↑ Grab this Headline Animator

Want To Do Your Bit?

More on Host The News On Your Blog Or Site

Hi Guys,

Hands up all those who've heard of MySpace!

Aw, c'mon, I know there are more of you than that. Let's try it again…

Hands up all those of you who've heard of MySpace!!

Hey, that's better !

Ok… so, hands up all those of you who've got a MySpace page!

More on Come Join Us Over At MySpace!

An E-Petition about the nature of M.E. / Chronic Fatigue Syndrome is currently underway at the 'petitions.pm.gov.uk' web site:

"We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome." ~ Submitted by Konstanze Allsopp

More on Petition

As you may or may not know, we've now launched the Sleepydust ME/CFS video on YouTube.

— SIDE NOTE — Not only that, but we've now made it free for anyone to show their visitors the ME/CFS video, on their own site [More…]. Neat huh? — SIDE NOTE —

But now we need YOUR help! We need your votes!

More on Vote For The Sleepydust Video!

There's no doubt about it - we can make more of a difference as a collective. That's why we've made our ME/CFS video available for FREE, for YOU to host on YOUR OWN sites, forums, and blogs…

More on Do You Have A Blog, Or Run A Web Site Or Forum?

If you've been experiencing problems accessing the free Sleepydust video about ME/ Chronic Fatigue Syndrome, it could be that…

More on Access To The Free Sleepydust Video

The Free Sleepydust Online Video has finally been launched!

The video aims to help the friends and family of ME/CFS [including Myalgic Encephalomyelitis , Chronic Fatigue Syndrome , and Post Viral Fatigue Syndrome] sufferers understand the illness and what their loved ones are going through.

More on Launch! The Free Sleepydust ME/CFS Online Video Now Available!

"IT'S REAL! IT'S PHYSICAL! IT'S THE NEW T-SHIRT FROM THE MEA!"

If you would like to highlight the cause of ME/CFS, then you may be interested in the new designer T shirts from the ME Association.

The T shirts come in all sizes and cost £8 which includes postage and packing.

To read the full article, click here.

Meg Sleepydust Newspaper Coordinator

"The medical profession is neglecting young ME sufferers according to national children's charity AYME (Association for Young People with ME). The organisation, headed by Esther Rantzen, has 3000 members and found in a survey that: * one third have no medical services offered one third were refused home visit even though they were too poorly to leave home * half could not access services offered to them because they are too disabled." – One ME Sufferer In Every Secondary School, The Daily Record, 10 May 2006 –

To read the full article, click here!

Claire Editor of Sleepydust

"In July 2005 a campaign was launched in Hampshire to protest about the opening of the latest of the new "ME/CFS clinics. "(…) They point out that bio-medical research grants have not been awarded whilst the psychiatric-based interventions have had government funding to the amount of £8.5 million [GBP] for establishing NHS Regional Clinics and £2.6 million [GBP] for the PACE and FINE trials. "The "Pacing, Activity and CBT: A Randomised Evaluation" (PACE) and the "Fatigue Intervention by Nurses Evaluation" (FINE) trials are both psychological/psychiatrically-led trials involving Graded Exercise Treatment (GET) and Cognitive Behaviour Therapy (CBT) which apply specifically to ME These are potentially harmful to anyone with classical neurological ME, as defined by the Canadian Criteria, since forced exercise can exacerbate cardiovascular problems. "These techniques are practised through the new ME clinics." – Sue Stockton, "ME: A hidden national scandal", GreatReporter.com, 11 May 2006 –

To read the complete article, click here…

I hope you find the article interesting!

Claire Editor of Sleepydust

"The ME Conference 2006 brought together delegates from 6 countries and forged new relationships between people who are determined to safeguard proper funding for treatment/cure for myalgic encephalomyelitis. (…) Invest in ME have set the price of the conference film at £13 [GBP] plus postage and packaging for UK delivery - so a single dvd set delivered in the UK will cost £15 [GBP]. There is a discount for bulk orders. The DVD should be available at the beginning of June and will contain all of the conference presentations in full. We also hope to include additional information on the DVD. To register or for more details, click here!"

Claire Editor of Sleepydust