Vintage Life for Joanna’s Violets

Hot off the press! The June 2016 issue of Vintage Life Magazine features a superb account by Laura Chamberlain of Joanna and her Vintage Violet’s Charity Catwalk, held in April at The New Caterham Arms, raising over £1200 for Invest in ME. Earlier this year, Joanna Chamberlain explained why she was organising this spectacular event for the charity in her story on JustGiving.

I am arranging an event that will be raising funds for Invest in ME, a charity very close to my heart. Both my son and daughter suffer from ME. Both of them first became ill as teenagers, went into remission as young adults and unfortunately became ill again with the disease in their mid twenties.

In the sixteen years since my son first became ill, very little progress has been made with research. We know, from the small number of studies that have been funded that there are many biological abnormalities in the body of an ME patient. And yet, there has been very little funding to find effective treatments or even a cure. When my kids became ill again, we discovered that, despite the many years that had passed, doctors still couldn’t offer any kind of treatment aimed at addressing these abnormalities, only therapies to help them manage and live with their condition.

This is where Invest in ME comes in. For researchers, ME is considered to be one of the last few areas of medicine where you can still make a breakthrough. They want to do this research but many of them struggle to get funding. Invest in ME are currently raising funds for a UK trial of a drug called Rituximab. The original studies in Norway were extremely promising. Two-thirds of ME patients given the drug had a major or moderate improvement. But to get this licensed as a treatment for ME, more research has to be done in order to verify the results and look further into why this is so effective.

So hopefully you can see why this is such an important cause. This research gives hope to the 250,000 people in the UK estimated to suffer from ME and they have been waiting a long time for this research to be done. The charity is run entirely by volunteers so 100% of the money raised will go into research.

I set up this page as I know there are lots of people who cant make the event but would still like to donate to this worthy cause – justgiving.com/fundraising/Vintageviolets

Many thanks to Joanna and her Vintage Violets and everyone involved in supporting this event, and congratulations Vintage Life Magazine on the stunning spread in their June issue with article by Laura Chamberlain.

Other credits..

1940s Clothes by Shona Van Beers of Heyday!
Hats by Jo Chamberlain of Hats by Joanna Violet
Bridal Headpieces by Fran Taylor of Crystal Heirlooms
Vintage car Brian and Emma Irving
MUA Manny Samra, Megan Carter Misty Tea and Millie Williamson
Photography Simon Alston Fox, Kevin Waller, Glynn Roche
Music and lighting Ian Phillips of Harrison Entertainment

Find Joanna And Her Vintage Violet’s Charity Catwalk on Facebook

Follow Joanna Violet on Twitter

Buy Vintage Life 67 online

Find your nearest stockists

You may also like Black Dress Day to see ME Awareness Month out in style on 31st May.

Last Week to Register for IIMEC11

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The Invest in ME Conference takes place on 3rd June at One Great George Street, Westminster, London. This is the last week to register for this prestigious international event, and to order the IIMEC11 DVD at the Earlybird price.

Invest in ME Research is a UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME. IIMEC11 is the eleventh annual CPD-accredited biomedical research conference organised and hosted by the charity and now attracts presenters, researchers, physicians, patient groups and journalists from twenty countries around the world. Quick links..

Conference Registration

Conference Agenda

Conference Venue

Order IIMEC11 DVD

Sponsorship Opportunities

Conference & Colloquium News

Message from the Chairman of Invest in ME Research

The 6th Invest in ME Biomedical Researchers into ME Colloquium takes place over 1st-2nd June. This is a closed workshop for active and potential researchers working on this disease, and you can read about it here.

We wish the charity and everyone involved every success for these vital events!

Other deadlines for supporters of our fundraising for Invest in ME Research..

Get ready to join us for Black Dress Day on 31st May

10 highlights from 10 years of Invest in ME & sign our online group card

10% off + reduced postage at Cards 4 Invest in ME (Alsion Orr on Phoenix Trading) – send a message on Facebook or Twitter

100% purchase price to Invest in ME for this necklace ‘never never give up!‘ by Lynne Allan (ME2UDezignz on Etsy)

More May Awareness & Fundraising for Invest in ME Research

Thank you for your support!

Black Dress Day

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We would like to invite you to mark the end of M.E. Awareness Month by joining us on the 31st of May for Black Dress Day for M.E. The aim is for better understanding of M.E. and hopefully treatment and cure.

The Black Dress conjures up images of glamour, socialising or memories of a special occasion. By participating, you are connecting with those who suffer with M.E. Recognising that many will not be able to enjoy special occasions or tragically may no longer be with us.

Black Dress Day for M.E. was founded by Janet Smart, who wrote, “Love and heartfelt thanks to Caged Bird who suffers from severe M.E. Her commitment to raising awareness is inspiring. You are the wind beneath my wings.”

M.E. stands for Myalgic Encephalomyelitis, a serious, disabling and chronic organic disorder, classified by the World Health Organisation (ICD-10 G93.3) as neurological. More About M.E.

Some sufferers may be able to work or socialise, but are constrained by PENE (Post-Exertional Neuroimmune Exhaustion).

Others develop severe M.E., completely housebound, wheelchair or bedbound and dependent upon carers for their everyday needs.

Black Dress Day is in aid of Invest in ME Research, a charity run entirely by dedicated volunteers to change the way that M.E. is perceived and treated in the medical profession and media.

They are well on the way to establishing a UK Centre of Excellence for M.E. with a biomedical research strategy underway to establish diagnostic tests and medical treatments for this disease.

Their objective is to take us to a position where research into M.E. is conducted with urgency and treatments are developed so that all patients benefit and there is no need for a charity such as theirs to make things happen.

They can only achieve this with your support.

Whatever your age or gender, wear and share your Black Dress or Black Tie, steal a style or even design your own, and share to show you care. Help us celebrate the new era of biomedical research into M.E. Looking forward to establishing tests, treatments, and hopefully, cure.

Find Black Dress Day on Facebook

Follow us on Twitter #BlackDressDay #MyalgicEncephalomyelitis

If you can and wish to donate in support or be sponsored to take part..

Donate to Black Dress Day
or text
BDME48 £10 to 70070

Thank you for your support!

Femi’s Walk for ME

By Kelly Sowande

My 11 year old daughter, Femi, will be taking part in the Walk for ME 2016 fundraising event. She will be walking around our village of Bridstow in a circular route for a total of 3 “laps” during half term at the end of May.

Femi decided that she really wanted to take part as soon as she heard about the event. She was super excited to set up her Just Giving page and even more excited when she saw her first donations coming in!

Both myself and her older brother have ME. We both developed the illness shortly after she was born, so she has only ever known a life where ME has been involved.

Not only has she seen the impact of this illness on myself and her brother, we are both mostly bedbound/housebound, but the consequences of the illness on family life. Life has been far from normal for all of us and for Femi the everyday events like a trip to the park or having a friend round for tea only ever happen rarely, but they are something she really appreciates when they do take place!!! I feel she has coped with it all really well and is growing up into a very loving and caring young girl who appreciates the little things in life.

Femi herself says:
“I am doing this walk for my brother and my mum beacause they both have ME and it changes daily life. I am happy I can help a little bit by doing this walk and rasing money for research to help them and others who have this illness”.

Click here to support fab Femi’s Walk for ME fundraiser

Caged Bird: The Soul that Sings

By Caged Bird

Hello, everyone! *waves wing*

It’s been a while, hasn’t it? Unfortunately, my body decided to have a MAHOOSIVE crash last April, after several months’ build up, and I have been trying to stabilise since. While not remotely stable, I am out of the immediate danger zone and my voice is thankfully coming back slowly but surely.

Unbeknown to us all until too late, I ended up with depleted B12 levels so low the effects were exceptionally severe, and I still have a third numbness (but with pain) from head to toe, on top of my usual symptoms (about sixty if I were to list them all, but obviously not all at once!).

As we know, ME’s effects vary in level. While most days – hours, even – those levels for me are still acute, I do get an occasional gap between my all-too-frequent hurricanes (migrainous attacks which last one to three days with a couple of days in between of normal head pain) where I can sing for a short time. So guess what I do when I have the chance? 😀

I suffer terribly for it. We ALL suffer for pushing our bodies and indeed our very cells more than they can cope with. But what is the point in living if one cannot attempt to feel alive? (Yes, I watched The World is Not Enough recently!)

I hope you enjoy it, and I hope you find some hope. I never thought I’d sing again – but I have. While I am still very, very frightened of what the future holds, I am clinging on tight to my dreams. Please watch, share, and donate if you can to my JustGiving page, located here – https://www.justgiving.com/CagedBird

Further reading..
Let’s Celebrate 10 Years of Invest in ME