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 –

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.

April Updates

April Updates

Dr. Nigel Speight was showered with expressions of support and gratitude in April by patients & families across the world upon news that the General Medical Council had published the conclusion of an Interim Orders Tribunal hearing that this wonderful doctor’s practice in the field of ME/CFS may be deficient (there were no findings of fact). The interim order states that Dr. Speight must confine his practice to NHS posts as a Consultant General Paediatrician. It prevents him from carrying out any work in relation to ME (including speaking or lecturing on the subject) and will be reviewed after 6 months. In January 2016 Invest in ME sent a letter to the GMC in support of Dr Speight. They have never heard of Dr. Speight being criticised by any patients or their families. On the contrary, he is extremely well regarded by everyone in the international ME field and has presented at the CPD accredited international Invest in ME conferences and invited to speak at numerous conferences in Europe. He gave the pre-conference dinner speech for the 9th international Invest in ME conference in 2014. His talk was on very severe ME and is included in the IIMEC9 DVD of presentations. So we patients with severe ME driving the Let’s Do It for ME awareness and fundraising for Invest in ME Research sincerely hope that Dr. Speight is relieved of these restrictions by the GMC at the earliest possible opportunity. We fully support high quality education of medical students & in-service training of NHS doctors. Our doctors deserve this and our lives depend upon it. Far from being denied the specialist expertise of Dr. Nigel Speight, the world needs more like him.

April Updates on the Invest in ME Research ..

Our update on the IiME B-cell / Rituximab Research

Our update on the IiME Gut Microbiome in ME Research

April Awareness & Fundraising for Invest in ME Research Funds ..

Model Joanna Chamberlain has two grown up children with ME and she hosted a Vintage Fashion Show in Caterham, Surrey raising over £1200 for Invest in ME Research Funds. Watch out for an upcoming blog on this spectacular event. Meanwhile, you can take a stroll back in time through the stunning photos at Joanna And Her Vintage Violets Charity Catwalk on Facebook.

Lee Taylor completed the Spring Wolf Run and exceeded his fundraising target for Invest in ME. Lee explained: “My younger sister Kassandra has suffered from this debilitating condition CFS/M.E for 12 years and most recently been diagnosed with fibromyalgia. I will be giving all donations received via “just giving page” to Invest in M.E on behalf of Solihull and South Birmingham M.E support group of which my sister has been a member for a number of years All donations will be very much appreciated.” What a great brother. Thank you Lee.

It was all Greek to marathon man Mike Harley as he ran the 5th of his 28 EU Marathons in Thessaloniki. Mike is doing a great job raising awareness of this illness and funds for Invest in ME as he makes his way across Europe. Invest in ME is a founder member and current chair of the European ME Alliance of patient organisations. Mike’s epic efforts are inspired by a determination to help all sufferers, like his friend Ian Couch, to have proper recognition and treatments for ME. Before setting off to defeat the Alexander the Great Marathon, Mike conducted an interview to find out what it’s like to be a patient with ME in Greece. Click here for Mike’s Spring Update.

Can it really be a year since amazing dad Mike Shepherd ran a full marathon at the North Pole? Click here to see our Facebook photo album of Mike’s incredible journey to the Arctic for Invest in ME.

Actor Jon Campling was up to tricks at Sci-Fi Scarborough. Not content with waving his Invest in ME Charity collection box with his usual flourish (scroll down Fundraising 2016) our favourite Harry Potter Death Eater unicycled across the stage! Michelle Nunn also tested his ability to learn his lines by challenging him to say ‘Myalgic Encephalomyelitis’. Is there no end to this man’s talent’s? Find out here on youtube.

We were thrilled to see Stacy Hart back at the Watford Observer. To celebrate her return she is giving away two of her exclusive design Runnin On Empty T-shirts and has given Invest in ME a slot in her new fortnightly column for ME news and we must say, didn’t they do well! Read more at Runnin On Empty- Good Grief, I’m Back.

Spreadshirt is offering free standard delivery for 2+ items until 1st May.
Checkout Code: TWOWOO
Valid until 01.05.2016.

All seller profit from our online shops goes direct to Invest in ME.

These are * Let’s do it for ME * Designer-ME * Make ME * The Big Sleep for ME *
* ME Awareness *

Joan Crawford’s coast to coast cycle ride will take place on the last weekend of April/beginning of May 2016 – the bank holiday weekend. Click here to read Joan’s interesting account of why she is doing this for Invest in ME.

Tom Moysey & John Savage set off on their cycle ride from John O’Groats to Land’s End on 29th April. Read all about it here.

Lynne Allan reached her target of 100 sales since opening her online jewellery shop on Etsy in October with which she raises awareness & funds for Invest in ME. See her full range at ME2UDezignz.

May is ME Awareness Month and this year is extra special as May 2016 marks 10 years since a small but mighty group of patients & parents registered as the charity Invest in ME. The first 3 days of June will see the 11th Invest in ME Conference & 6th Biomedical Researchers into ME Colloquium.

We’ll follow shortly with more news and a summary of what supporters are doing for May Awareness & Fundraising for Invest in ME Research. ME Awareness Week is 9th to 15th and May 12th is International Awareness Day for ME and other Chronic Immunological & Neurological Diseases.

We also hope to bring you news and updates throughout the month. So this is may be a good time to click here to enter your email address if you would like to receive our blogs by email and to please contact us if you would like us to feature your event, write a guest post for our blog, or with any questions.

Latest totals for Invest in ME Research Funds ..

£483k raised of £520k target for the B-cell/Rituximab Research

£167k raised of £200k target for the Gut Microbiome in ME Research

There are also current sponsorship opportunities for the Invest in ME Conference Events.

Thank you for your support!

April Updates