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April Updates

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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

John and Tom Cycle from John O’Groats to Land’s End

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By Tom Moysey

Savage Moysey - JOGLE 2016
John Savage and Tom Moysey JOGLE Cycle 2016

John and I will be slipping into our finest lyrca to cycle from John O’Groats to Land’s End between 29th April to 13th May. It will be tough, the weather may be terrible and our lyrca may chafe but it will be a great adventure.

The idea initially started as a bit of an adventure as it’s something that we’ve had in the back of our minds to do for a while and last year John decided now was the time and we started to get the ball rolling (initially by buying bikes as neither of us even had a bike or any cycling gear until the middle of last year!).

In terms of the charity aspect, one of my oldest friends was struck down my ME about a year and a half ago and went from being a PE teacher and avid sportsman to pretty much house bound for over a year. Even now he only feels 45% of his old self but he’s learning to manage the illness as best he can.

He wrote a blog some time ago (link below), which was the inspiration behind our decision to do the ride for Invest in ME as neither John or I were aware that ME research/treatment is so poorly invested in – it’s pretty shocking and unbelievable when you actually hear the facts about it.

We’ve spent many hours doing all the planning ourselves and will thankfully be supported by John’s father in law, who will be following us in a motorhome (which will be our home for the two weeks).

All that’s left now is to get cracking and pray for good weather (seeing snow in Scotland is not the best start to the week of departure!).

We set off on our journey up to John O’Groats on Wednesday 27th April, in preparation to start the long cycle south. Many thanks for the good luck wishes! For any donation, small or large – thank you!
 

Show your support: share John and Tom’s event
&

 
The article that inspired this event:
Raising awareness and finding a cure. M.E- The hidden illness Blog by John Mackay. Both this blog and the article shown below were published in May 2015.
 

Article by Tom Ramage in the Strathspey & Badenoch Herald in May 2015 about John Mackay's fundraising for Invest in ME.
Article by Tom Ramage in the Strathspey & Badenoch Herald in May 2015 about John Mackay’s fundraising for Invest in ME.

Update on IiME Gut Microbiome Research

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Professor Tom Wileman will be presenting preliminary results of the IiME research on the role of gut microbiota in Myalgic Encephalomyelitis (ME) in London in June at the 11th Invest in ME Conference and 6th Biomedical Researchers into ME Colloquium. News page here.

The current phase of this research is to collect blood and stool samples from severely ill patients by visiting some in their homes. The patients need to be current patients of Dr Amolak Bansal, as ethics rules demand that a named doctor is responsible for any patients taking part in research. Dr. Bansal leads the specialist clinic in Sutton, Surrey. Patients have been sampled all through the project once ethical approval had been obtained.

The PhD student working on this research, Daniel Vipond, is organising this latest sampling of patients in the most effective way possible. He will be travelling from the week of the 11th April to ME sufferers homes to collect blood and stool samples. Rachel Fulton posted in Invest in ME group on Facebook:

“It has taken years to get this project off the ground and a huge amount of fund raising. I would be so grateful if more people can take part in this study. We will ALL benefit from more bio-medical research doing into ME.”

If you are a patient of Dr. Amolak Bansal with a firm diagnosis of ME, particularly if you are housebound or severely affected, and would like to take part, please get in touch with Daniel Vipond as soon as possible.

Email daniel.vipond@ifr.ac.uk or call 07943149314.

Contact details are on the participation posters published in April 2015.

The Let’s Do It for ME campaign was launched by patients with severe ME to help raise awareness and funds for this research, the foundation project of the IiME UK Centre of Excellence research strategy.

The Institute of Food Research and University of East Anglia issued press releases in March 2014 and Susie Fowler-Watt interviewed Professor Simon Carding for a May 2015 report by BBC Look East. Our thanks to everyone involved.

Read all about the IiME Gut Microbiota Research on our page here.

The current total raised for the IiME Gut Microbiota Research is £166k of £200k target. You can donate from any country on JustGiving
or text MEGR66 (£1-£5 or £10) to 70070 (UK only).

Or donate on Invest in ME website here.

Thank you for your support!

April 2016

Gut-Microbiota-166k
 
Participation Posters Published April 2015

IIME Rituximab Research Fund Tops £480k

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Thanks to multiple generous acts & fundraising by individuals and organisations including amazing generosity from the Hendrie Foundation pledging a huge sum toward the Rituximab Trial and B-cell Research being organised by the charity Invest in ME (Research) the amount raised is now £484k towards the £520k target. This includes the research either now published, currently underway, or going to be performed. Please click here for details & ways to donate or pledge to the IiME Rituximab Research Fund or read on for the Layman’s Summary of the first paper now published in the journal Clinical & Experimental Immunology.

Following the recent publication of the first paper on the research at University College London (UCL) into myalgic encephalomyelitis (ME) initiated and funded by Invest in ME (IiME) and supporters, the charity asked Dr. Jo Cambridge and Fane Mensah from the UCL team to explain, in layman’s terms, what the paper was describing. The paper is ‘Extended B cell phenotype in patients with myalgic encephalomyelitis/chronic fatigue syndrome: a cross-sectional study‘ – http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/abstract;jsessionid=C57DA1EB5B711D2BEA9C3A468F138C81.f03t02

Here is their Layman’s Summary –

We would like to thank all the patients – and their friends and families – for participating in the UCL B Cell Phenotype study.

As a result of their generous donations of time and blood, we are delighted that our B cell Research Programme (funded by IiME) has been compiled and accepted for publication in a peer reviewed journal, Clinical and Experimental Immunology.

This is the official Journal of the British Society of Immunology (please find a PDF copy attached).

The initial aim of our studies was to investigate whether there was any difference between surface markers expressed on B cells from patients with ME/CFS and those from age and sex matched healthy controls.

We looked at the % cells positive and also the number of markers per B cell, of 18 different markers expressed on B cells.

As you are aware, promising results have been reported from Norway in 2 earlier B cell depletion (Rituximab) trials and we are investigating many aspects of B cell function which may indicate, firstly, why Rituximab seems to work and to also identify patients most likely to benefit from this or related therapies.

In our study we have found no significant differences between the 10 traditional B cell subsets of ME/CFS patients compared to those from controls.

We then added in additional markers in order to further extend this characterization.

Here we did find an increase in a molecule expressed on ‘new’ B cells, that is the ones most recently exiting the bone marrow.

This is a differentiation marker called CD24.

CD24 polymorphisms (genetic changes) have also been described in different autoimmune diseases.

CD24 is a cell ‘adhesion’ molecule which is involved in the way B cells interact with other cells and with their surroundings.

This marker is important in the early stages of B cell maturation, where it is also at its highest expression and it is where we have found the differences.

We have also found another B cell phenotype which may be related in a negative way with disease duration.

We hope to extend these studies to other ME/CFS cohorts in other centers.

We will now continue to investigate the functional consequences of these changes in CD24 expression to get a better picture of what these findings may mean in relation to ME/CFS symptoms and in relation to what is found following Rituximab therapy.

By Dr. Jo Cambridge & Fane Mensah at University College London.

(original source – http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm)

Dr. Jo Cambridge and Fane Mensah will be involved in the charity’s 11th international Invest in ME Conference (IIMEC11) & 6th Biomedical researchers into ME Colloquium (BRMEC6) in London in June, along with biomedical researchers from at least 15 countries. It was attendance at these events by Professor Jonathan Edwards and Dr. Jo Cambridge that led to this work being undertaken at UCL enabling Invest in ME to honour their commitment to initiate the rituximab and B-cell research.

Thanks to everyone supporting the Invest in ME Research strategy of high quality biomedical research, international collaboration and the development of the Centre of Excellence for ME which is gathering pace, and managing to change the landscape of research into ME once and for all.

DONATE/PLEDGE TO IIME B-CELL/RITUXIMAB RESEARCH

LAST UPDATED 7th May 2016

Donate £1 to 1st Class ME Research

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The original idea by Ruth Gilchrist for One Day – One Pound was for as many people as possible to donate just £1 on May 12th International ME Awareness Day to the charity Invest in ME Research to show support and help raise vital funds for 1st class biomedical research for tests and treatments for ME (Myalgic Encephalomyelitis).

We extended this to include a monthly reminder of our ongoing fundraising for this vital cause on the 1st of each month. Donations at any time are welcome. Every £1 makes a big difference to the vital work of this small charity – Invest in ME Research. You can donate to the charity via JustGiving, PayPal, Bank Transfer, Cheque, or SMS. They are also registered with Big Give, and BT mydonate. 

Gift Aid is an extra 25% of your donation from the government if you are a UK tax-payer, so please tick the Gift Aid box when you donate if this applies to you.

WAYS TO DONATE

JustTextGiving (UK)

Text APFR99

£1-£5 or £10

to 70070

You can add your name and Gift Aid if eligible by text.

JustGiving
(any country, any amount from £2)

https://www.justgiving.com/onedayonepound/
(text donations add to the total raised on this page).

PayPal

To: paypal@investinme.org

Bank Transfer

Bank: Lloyds TSB Heartsease

Sorting code: 77-66-53

Account number: 22439568

Bank Transfer from outside the UK

IBAN: GB63 LOYD 77665322439568

BIC/SWIFT: LOYDGB21E05

Cheque

Send cheques payable to ‘Invest in ME Research’ to:

Invest in ME Research
PO Box 561,
Eastleigh,
Hampshire,
SO50 0GQ

(add Gift Aid to your donation with Invest in ME Research Gift Aid form)



Please help spread the word….

Let’s Do it for ME is a patient-driven campaign launched in 2011 in support of the proposal by independent UK charity Invest in ME Research to establish a centre of excellence for translational research and patient care based around Norwich Research Park in East Anglia; the first of its kind in UK/Europe and in collaboration with other leading UK and international biomedical researchers.

We help to raise funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding in their development of the centre of excellence. Our crowdfunding for specific ME research is the first of its kind in UK and has inspired similar projects in Europe and USA. We have now helped to raise over £680,000 for the IiME Research strategy to develop and are aiming for £1,000,000.

The current focus of the research is on the role of the immune system, including infection and autoimmunity. Two major research projects are on the role of the gut microbiome and research on B-cells leading to a UK clinical treatment trial of rituximab.

Invest in ME Research is run entirely by volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown.

Thank you for your support.

Let’s Do It for ME!
ldifme.org

in support of Invest in ME Research
investinme.org

Invest in ME Research Centre of Excellence for ME
investinme.org/research-centre.shtml

Invest in ME International Conference & Biomedical Researchers Colloquium
investinme.eu

IIME B-cell / Rituximab Research
ukrituximabtrial.org