30 August 2013

20% off EVERYTHING at Spreadshirt til 4th Sept!

Thinking ahead to gifts for Christmas or just for awareness combined with practical use .. ?

20% of EVERYTHING from Spreadshirt til Sept. 4th - code: SUPER20

Please browse the shops below for a wide range of items and gifts.

Jan's Let's do it for ME Spreadshirt shop (inc. ldifme logo items)

Carmel's M.E. Awareness Spreadshirt shop (inc. IiME logo items)

Jon's Make ME Crafts Spreadshirt shop.

Julia's Big Sleep for ME Spreadshirt shop.

ALL the seller proceeds from the above shops go direct to Invest in ME (IiME Charity) so let's go online shopping for ME!  

Many more products than just T-shirts!

18 August 2013

IiME/UCL Rituximab Fund £50k! Work can begin!

Invest in ME

The UK Rituximab Trial for ME

August 2013

On 6th June Invest in ME announced that we were in discussions to set up a UK trial of rituximab for ME patients and since that announcement things have been progressing well. The charity had been working on trying to get such a trial started since the IIMEC7 conference.
In updates published through June/July, we have stated that all that is required for the trial to proceed is the funding.
As such, IiME began fundraising for this trial and invited everyone to support us in this project.

Recently we arranged a specific web site which has been set up to inform on all aspects of the UK rituximab trial. This is at -

and we reiterated the current status - 

  • We have the facilities available.
  • We have the researchers available.
  • We have the best expertise possible available.
  • We have the means of fundraising for this trial available (see The MATRIX - click here) and we have a campaign to raise funds

As we have agreed with our advisor, Professor Jonathan Edwards, the proposed clinical trial will undergo a rigorous peer review process.
We have reached this position thanks to the vision, efforts and help from Professor Edwards, Dr Cambridge, UCL and our supporters.
We have emphasised from when we announced the trial that the only element required is funding.
IiME will continue organising and raising funds for this trial. The IiME BRF Rituximab fund is specifically ring-fenced in a separate account for the UK rituximab trial.
The first part of the trial will be a preliminary study which will confirm the earlier work of Dr Amolak Bansal [1] on B-cells but using a different cohort of ME patients.
Professor Edwards believes this is a useful study in its own right and a pre-requisite for the clinical trial. Meanwhile work is continuing on the design of a protocol which will be finalised after the trip to Bergen that IiME and Professor Edwards have arranged.
Good progress is being made and IiME are committed to expedite this trial as best we can. To achieve this IiME has recently been in discussions with a charitable foundation with a view to help in funding this work.
We are enormously pleased to announce that, thanks to the extraordinary generosity and support of the foundation's representative, our biomedical research fund for the UK rituximab trial has now reached £50,000. This is due to a donation from the charitable foundation which will match our existing BRF rituximab total of £25,000. The charitable foundation currently wishes to remain anonymous but they have asked us to keep them informed of the progress of plans for the trial and we are sure that the ME community will join us in thanking them for this wonderful support
This now means that the first part of this project can be initiated by the UCL team without delay.
We thank all those who are supporting this trial and we will continue to provide information on the status of the trial as we progress.
We now resolve to increase our efforts to raise the remaining funds for the trial and ask for your continued support in this project in the knowledge that it will benefit all people with ME and their families.
The fundraising for this trial is being organised and coordinated by IiME so please contact IiME directly if you or your organisation would like to assist or contribute.
If anyone would like to ask any questions about the UK rituximab trial then please use the Contact form on the rituximab web site (click here).

In summary we feel that the best research team possible to undertake this trial is now able to begin the work) - taking a huge leap forward in ME research in the UK.

Thank You.

Support ME Awareness - Invest in ME
August 2013

14 August 2013

Raising Money for ME With The Unremarkable Book and Other Stories

 My mother-in-law was diagnosed with ME over 15 years ago, ever since I've known her really. She's lived with it for far longer than anyone should have to and despite having to fight against everything life throws at her, she does fantastically well. To know I was writing something like this about her would make her very uncomfortable, this isn't just being humble for humbles sake, she just gets on with things no matter what they are. Having said that she has suffered for far too long, often feeling maligned, snubbed, marginalised and even vilified for her illness - and she's not the only one. 
I'm not an expert in ME, I'm not even close to be able to speak about it with any kind of authority, nor could I even pretend I know what it feels like - but I know that the general lack of treatment and support is wrong. As long as I've known my mother-in-law I've wanted to do something to help; by which I mean more than just push her in her chair and take her out occasionally. The problem is that this is no where near as regular as I'd like and does not feel like anything more than a temporary measure.

Raising money for Invest in ME is something I feel strongly about, although as a charity it's one I have only heard of recently. But since I've seen the impressive list of achievements behind them and the real work in raising awareness and more importantly its progressive stance on finding a workable treatment I knew that it was a cause I wanted to aid however possible. I don't have a lot of money to give myself, but I don't think it's just an issue of giving funds (although that's vitally important), it's also about getting people to engage with the issue, to acknowledge it for it is.

I've been an author to one degree or another for the last decade, from casual blogging to paid projects, but this is my first publication and I couldn't be more excited about it. When writing these stories over the last five years I didn't imagine I'd one day publish them, but having finally see it go on sale it all seems to fit rather well. I shan't try and pretend that the stories somehow cover ME or somehow feed into it, well not any more than anything else seems to. But what I do say is that I want to help get people to see things differently, to appreciate an aspect to an issue they might not have seen before. In some amazing act of serendipity this is also what I want for people's attitudes to ME - I don't think this is a matter of convenience or a need for "closure", but I at least think it's fitting. 

There are a couple of ways I hope people can help support IiME with this book, firstly through all profits of the sale via Amazon  or, for those who aren't able to support financially - through spreading the word and helping gain more exposure using the "pay with a tweet" button. I would of course love to see everyone contributing towards this great cause, however, I realise this isn't just about raw funding, but also changing attitudes and hope that through my work here, I might contribute something towards affecting a change of some kind - no matter how small. 

From an author's prospective I hope that you enjoy the book and take something away from it once you've finished. For more information about the book itself and how to get a copy take a look here, and if anyone wants to get in contact you can find me on Twitter and Google+ - I look forward to hearing from you!

9 August 2013

Meet Mirry Mitchell

Mirry Mitchell
Did you see my little Etsy shop? ( www.mirrymirry.etsy.com ) it fast became the outlet to help me keep my sanity. It's tough to sit in a room all day long, every day, all alone & keep picking up your needle to lay stitch after stitch though (that's my thing, creating lots of little stitches you see) if there's no motivational reward, if those time-given completed creations are just headed for the back of an already bursting cupboard. So what d'ya do? You open an Etsy shop & see if anyone would like to 'love' your pieces & thus save them from cupboard-doom. Still not enough to keep you inspired?...you pool the money into a little pot & when you've got a tidy sum, you donate it to a much needed, greatly deserved cause....

In my case that'd be Invest In ME (IiME), 'cause they're an awesome bunch of dedicated, un-paid (yep you did read that right) hard working, charitable, caring, eager peeps. 'Cause they're fresh off the block & already working on the 'this-big-time-stuff-is-really-gonna-make-a-mahoosive-difference-to-the-long-neglected-but-we-ain't-ever-gonna-forget-you' ME sufferers. T'is true innit! You know it is, but go ahead & check it out, i'm talking s-e-r-i-o-u-s plans ahead, i'm talking DRUG trials, yeah you got it, drug trials on ME patients. When did you last hear those words uttered from a UK ME charity? We all know this could procure fabulous advances for our prospective treatment, diagnosis, care & management, not least of all attitude. Wouldn't it be something magical if attitudes from doctors, specialists, therapists, (friends & family for many too) could somersault & land the RIGHT WAY UP! This could do it. I really believe IiME could help create that turn.

& that's why my little bit of Etsy shop crafting profits are heading straight over to their big collection pot, it's maybe a bit vain donating to something holding benefits for myself, but nothing's going to change if WE don't help make it happen. There comes a point where we just have to help ourselves, & i'm game, i'm in, i want to be a part of it. i don't expect to sit back & let others run themselves ragged for me, i won't be coming forward with greedy open hands when they announce they've found a treatment if i haven't done the mere TINIEST capable thing to help earn it. So very many fabulous folks (ME'ers abundant!) are doing what they can (even the itsy bitsy-est of things are huge when we're on board together), raising money, spreading awareness & helping to support the Chieftains who are working on the Master Plan for US. I love it! i'm excited! I'm yakking on too much. I'll leave you with some pics, in a bid to counterbalance all that waffling.

Ps before i go.. spare a quid? Just £1?, even if just once in this whole year? T'is estimated some 250,000 UK folks have ME (i think it's more, that figure's decades old), if every one of them flipped a pound over to IiME, just imagine what awesome stuff they could do for us, just imagine what a difference that could mean for your tomorrows.  

S'only a quid right?

The lovely Mirry inspired The Matrix fundraising idea with her generous £1000 donation to the IiME Charity Rituximab Treatment Trial JustGiving page.

To donate £1 to the IiME rituximab treatment trial text RTUX66 to 70070 

To donate £1 to the IiME biomedical research fund text BMER99 to 70070

or click here for other ways to donate to IiME for biomedical ME research

A big thank you Mirry and all who support the small charity with a big cause! 

8 August 2013

Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis

8th August 2013 marks the first Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis.  This idea was conceived by Diane, mother and carer of Lili, and has been launched by the 25 percent M.E. Group.   Diane's account of Lili's story may be read on Invest in ME website (click here).  25% of people with ME fall into the range of severe and very severely ill.  8th August was chosen as this is the birthday of Sophia Mirza, who died from very severe M.E.  in 2005 aged 32 and would have celebrated her 40th birthday this year.  Sophia was among those who paid the ultimate price for medical mistreatment as consequence of the medical ignorance and psychiatric dogma that causes suffering to this day, and which the Invest in ME strategy for biomedical ME research and education of the healthcare profession aims to address, and this is why they have our full support for the work they are doing, as it will help bring an end to unnecessary suffering and untimely deaths.   Professor Malcom Hooper and Margaret Williams wrote in a recent statement:  "The charity Invest in ME has provided a truly remarkable opportunity to address one of the biggest medical scandals in history and to remove what in 2007 Alex Fergusson, Presiding Officer (Speaker) of the Scottish Parliament, referred to as “the cold grip of psychiatry” on myalgic encephalomyelitis (ME), which he said was “still far too deeply rooted in the world of ME” (http://www.meactionuk.org.uk/Defiance_of_Science.htm)." (click here).

In the press release announcing the launch of our campaign two years ago, we paid tribute to Sophia and Lynn Gilderdale.  The privately commissioned specialist neuropathology post-mortem examinations on both young women showed evidence of damage that warrants the World Health Organisation classfication as a neurological disease of the correctly named benign myalgic encephalomyelitis - benign as it is not fatal within a short time - hence the many years of unnecessary suffering that can ensue as a result of medical misunderstanding and mismanagement.  Just one such death is one too many, but there have been many more and the suffering of countless others is ongoing.  Behind the fun of our campaign lies a very serious purpose.  We aim to educate medical students, doctors and other health professionals about the facts of this disease and what is known from the ongoing research, so that they may be in a better position to treat patients correctly and at least do no harm if they are unable to prescribe effective treatments.  The National Institute of Clinical Excellence guideline for ME is in urgent need of updating and particularly with regard to severe ME.

Our campaign was inspired by a report on the proposal by Invest in ME to establish a patient examination and research facility in Norwich, which would be the first of its kind in UK/Europe and could develop into a centre of excellence.  Kerry has very severe ME and was featured in that report.  She had been a text friend of Lynn's.  Kerry is also pictured in our awareness posters, designed painstakingly over several months by another sufferer of severe ME.  Members of the Collingridge family's Facebook group had also been sent Emily's Appeal, with a request to repost it to raise awareness.  Invest in ME has close links with the Alison Hunter Memorial Foundation in Australia.  Alison was another young life lost to this disease.   My nature has always been that if I see a problem, what can I do to help solve it?  I can offer a listening ear, sympathy, empathy, but what can I actually do to help?  My instinct was that the most useful action I could take under the circumstances would be to help Invest in ME to bring their proposal to fruition by helping to raise awareness and funds for the research.  If the Norwich Centre helped Kerry, that would be reward enough, but I know that it stands to help others in her region, as well as tens of thousands across UK and ultimately millions around the world, as the work in Norwich is part of an international drive by highly skilled and dedicated researchers working together with patients to nail this dreadful disease once and for all.

So, with the approval of the lovely folk at Invest in ME and the help of my like-minded Facebook friends, Let's do it for ME was launched in July 2011.  We could say the rest is history but we are not done yet and this is about the future.  Ill as we are, from our homes and beds, and with the help of our well friends and families, knowledgeable and experienced clinicians, scientists, and researchers, we will fight the good fight until we have achieved proper recognition and understanding of myalgic encephalomyelitis as a serious and life threatening disease (as now recognised by the FDA) across the range from mild to very severe, most importantly to the medical profession, and also to the media and wider public.  There is no more constructive way to honour the memories of those we have lost from our global community and no better way to forge hope for the future for those suffering now and those to come.

The situation of severely ill bedbound ME patients was discussed by some of the presenters at the 2013 IiME conference (IIMEC8) and these extemporaneous notes on severe ME may be found on Invest in ME website (click here) and a link to a small survey on caring for seriously ill ME patients (click here).

Dr Peterson from US said that the healthcare system is not geared for these types of patients. In the past these patients would have been cared for in hospitals with alimentary treatments but now the cost is prohibitive.

Dr Staines from Australia said the situation is bizarre as normally the most severe patients in any illness get most attention and are hospitalized but in ME the situation seems to be reverse.

The Australian Marshall-Gradisnik research group has included severe ME patients in their studies but have not found any differences in the immune system parameters in groups rated according to severity.

Dr Staines pointed out that ME is however a multisystem illness and the immune system is only one part of it.

The Griffiths University, where the Marshall-Gradisnik group is located, also has beds for patients so that they can include severely ill patients in their studies as well as monitor patients for 24 hours or more.

This is something that should be possible elsewhere too.

Doctors simply do not know what to do with these patients so there is an urgent need for education.

After the conference Dr Bansal from UK added the following especially for Invest in ME for a forthcoming news article (which subsequently was not used), explaining severe ME in the following way -

“While it is presently very difficult for modern medicine to fully explain all severe ME symptoms, disordered neural function within the brain and spinal cord would come close.

How this occurs is unknown but there are counterparts in certain newly described autoimmune conditions and viral infections of the nervous system.

In addition to a direct stimulation of neurones in different parts of the brain and spinal cord there is also an impaired filtering function of the brain stem and a reduced threshold for neurones to fire off.

This allows external stimuli such as movement, light, sounds, touch and sometimes even worrying thoughts to produce widespread neuronal activation with ultimate excitotoxic damage to these cells.

The consequence is impaired activity of the brain generally but particularly the hypothalamus and prefrontal cortex leading to fatigue, disordered sleep, impaired memory, attention, faintness, palpitations, disordered respiration, temperature dysregulation etc.

Outwardly many patients appear well and routine blood and other investigations are normal.

Internally there are severe symptoms which, if unchecked, escalate leading ultimately to immobility and increasing pain and spasms in a proportion of patients.

Clearly a greater understanding of this highly disabling condition is required with a greater focus on disrupted immune and neural pathways and not just psychosocial factors as has previously been the case.”

An excellent report on the launch of this special day of Understanding & Remembrance Day for Severe Myalgic Encephalomyelitisby Gabby Nielk may be read on Pheonix Rising (click here).

Lost Voices from a hidden illness is a beautifully photographed book of accounts of by people with severe ME and their friends and family members, along with excellent information about ME.  The book was compiled for Invest in ME by Natalie Boulton, who later co-produced the film Voices from the Shadows.

Light a Candle in the Darkness of ME

7 August 2013

NEW! A Web Site for the UK Rituximab Clinical Trial for ME

From Invest in ME (IiME Charity): 

"Hello everyone,

The team have created a microsite for the UK rituximab trial.

We welcome feedback and comments and hope the site will grow with useful information as the trial progresses and as the target is reached.

Thanks everyone for the wonderful support and teamwork."

Invest in ME

A Web Site for the 
UK Rituximab Clinical Trial for ME

August 2013

In order to make it easier for ME patients, ME support Groups, charities, organisations, researchers and the media to find more easily and bookmark the central point for the UK Rituximab Trial then Invest in ME have set up a special micro-site to collate all of the relevant information.
simple to remember - UK rituximab trial.
We hope this makes it easier for everyone and we welcome support and additions to the site as the trial begins.
The micro-site includes the new MATRIX fundraising scheme which allows everyone to participate and support us and at the same time provides recognition.
A facility will be added to allow questions to be posed and answered.
Thank you to everyone who is supporting the UK rituximab trial.
We have had support from twelve different countries already.
Just to summarise -
  • We have the facilities available
  • We have the researchers available
  • We have the best expertise possible available
  • We have the means of fundraising for this trial available - see The MATRIX 
  • We have already contacted others to invite them to support our fundraising efforts and we welcome pledges for funding, even delayed until the peer review process has been achieved

Invest in ME have contacted other organisations and welcome their pledges for financial support as well as moral support. To those organisations who are really helping us and working toward the same common goal we thank you.
To all our supporters and the fantastic Let's Do It For ME team our thanks are eternal. We are truly humbled by the support you are giving us, by the efforts you are making and by the integrity you are showing. 
Invest in ME are coordinating this trial and the fundraising with Professor Jonathan Edwards. More news will be made available on the new web site.
We invite everyone to participate.
Please support us in this venture - by helping funding, by helping in fundraising or even just raising awareness of the charity's proposal. 
Thank you.

Help with fundraising for the UK rituximab trial - join the MATRIX

The Way Forward for ME - A Case for Clinical Trials
Invest in ME

Registered UK Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ

Support ME Awareness - Invest in ME

3 August 2013

Introducing - The Matrix!

 We hope you will love this idea as much as we do and encourage any individuals, groups, organisations, local businesses, to take part.  

UK Rituximab Trial -Let's Do It
Help Us Perform Biomedical Research into ME
Take a slot in the Matrix to Raise Funds for the UK Rituximab Trial

Inspired by a £1000 donation to the UK Rituximab Treatment Trial JustGiving page, the Let's do it for ME team have come up with an idea to help raise awareness and funds for this important biomedical research into understanding and finding effective treatments for ME.

The aim of the The Matrix project is to help to raise as much as possible of the £350,000 required to fund this trial by inviting 100 pledges to raise or donate £1000 each.

Invest in ME will coordinate the fundraising for this trial.

The charity has already invited other charities and organisations to support us in funding this trial.

We invite everyone to participate.

How the MATRIX Works
  • Each of the initial 100 slots in the Matrix has a value of £1000.
  • If those taking part manage to exceed their £1000 target, then so much the better for the future and progress of our strategy for biomedical research and treatment.
  • If the £1000 target is not reached then it does not matter - as every £1 helps and there is no pressure to fulfil the pledge.
  • These are pledges until the funds are received by the charity and so may be withdrawn or halted by the prospective donor at any time until then for whatever reason they may have.
  • For those pledging via a fundraising effort, we will be happy to create a JustGiving page for anyone wishing us to do so on their behalf. We can also provide sponsorship forms, collection vessels, and awareness materials. Please just let us know your needs.
  • For every £1000 pledged, raised or donated, one slot may be taken, so that those who raise £2000 could fill two slots if they so wish, and so on.
  • There is no upper limit to the number of slots that one donor may fill.
  • The slots may be taken by individuals, groups or even companies.
  • The slots do not have to be solely in the UK - we invite our international friends to take part.

  • There is no time limit on when each £1000 must be donated but the sooner these fund are raised, the sooner the trial may begin, as there are no foreseen obstacles bar the funding.

Let's Do It For ME/Invest in ME have initiated this idea to get a UK rituximab trial started as soon as possible.

As each of these initial slots is taken we will highlight the donor or fundraising initiative and link to individual pages or sites, and provide an ongoing status on the projects.
If we have more than 100 applicants then we can create more slots, aiming to build to 1000 x £1000 for biomedical ME research, and just imagine what that would achieve?!

The UK rituximab trial has been initiated by Invest in ME and our advisor, Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), and the research team at UCL. Professor Edwards was responsible for both the phase I and the proof of concept phase II (NEJM 2004) studies in rheumatoid arthritis , which formally established the validity of B cell depletion in autoimmune disorders. 
At our recent BRMEC meeting Dr Jo Cambridge from UCL played a significant role in proceedings. Professor Edwards joined our IIMEC8 conference in London and has discussed with the Norwegian Haukeland researchers who are conducting clinical trials with rituximab.

If you would like to take one of the slots in the 100 x 1000 matrix then click one of the Free slots in the Matrix (use the link highlighted below) and add your contact details to the form which will send us an email. Specify your contact details, your fundraising idea or direct donation, and any text/images you would like us to use to build your page in the matrix.

If you would like to donate to this fund by another method then please see the How to Donate options on the rituximab trial page.

If you feel you can support us in any way - by fundraising, by spreading word of this, or by simply letting us know that you agree with us then we welcome that support.

Click here to find out more about the UK rituximab trial.

Click here to find out more about the Let's do it for ME awareness and fundraising campaign.

We invite you to join The Matrix - Let's do it for ME!

Small Charity BIG Cause - Help us make this big idea a reality

Support ME Awareness - Invest in ME
Last Updated: August, 2013

Statement by Professor Malcolm Hooper and Margaret Williams

The UK Rituximab Trial for ME

Professor Malcolm Hooper         Margaret Williams

2nd August 2013

The charity Invest in ME has provided a truly remarkable opportunity to address one of the biggest medical scandals in history and to remove what in 2007 Alex Fergusson, Presiding Officer (Speaker) of the Scottish Parliament, referred to as “the cold grip of psychiatry” on myalgic encephalomyelitis (ME), which he said was “still far too deeply rooted in the world of ME” (http://www.meactionuk.org.uk/Defiance_of_Science.htm).

Now, however, despite the power and control of the psychiatric lobby, thanks to Invest in ME and the invaluable support of Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College, London, (world-renowned for his work in B cell immunology and as lead researcher in the clinical trials of rituximab for rheumatoid arthritis), the neuro-immune disease ME is at last about to enter the realm of mainstream medicine in the UK under the guidance of Professor Edwards himself.

Invest in ME are at the forefront of international biomedical research and have by sheer determination and effort managed to put things in place for a trial of rituximab to begin on ME patients in the UK. They recognise the urgency of the situation and know that many ME patients do not have the luxury of time. The charity already has the facilities in place, including suitably experienced researchers (Professor Jo Cambridge is now principal researcher at UCL, and the ME trial will involve the same team working under her that carried out the rituximab research in RA).

The Clinical Trials Unit at UCL is already working on the protocol, and Invest in ME have agreed with Professor Edwards that the protocol will be externally reviewed even though the UCL team will make sure it is cast-iron by their own internal reviewers.

Invest in ME have been told this trial could start relatively quickly if the charity had funds available. Such an opportunity must not be lost. However, this will not happen without substantial funding.

We therefore ask everyone who is able to do so to donate whatever they can afford, in order that the UK rituximab trial can get under way as quickly as possible whilst the excellent facilities and committed staff at UCL and the active support of Professor Edwards remain available, so that ME can finally be recognised as the devastating multi-system neuro-immune disease that it is and – most importantly -- so that sufferers may at last have some hope of alleviation of their suffering.

Invest in ME have assured us that all donations to the rituximab fund will sit in a separate account which is totally ring-fenced, and should the trial not proceed, the following statement on the IiME website will be honoured –

What Happens With These Funds If The Project Does Not Go Ahead:
If the rituximab project does not go ahead for some reason then the funds raised will be transferred to the IiME Biomedical Research Fund to fund other biomedical research projects which are attached to our proposal for an examination and research facility based in Norwich Research park in Norfolk, UK. These funds will only be used for biomedical research into ME.

A UK trial of rituximab is essential to move ME out of the realm of psychiatric dogma and into the realm of medical reality.

Information on how to donate can be found on the Invest in ME website:www.investinme.org


Invest in ME wrote in their Facebook group: Thank you Margaret Williams and Professor Hooper.  Lovely endorsement from those to whom the ME community will be eternally indebted. 

From the team at LDIFME: Our grateful thanks to Margaret Williams and Professor Hooper for their unwavering advocacy for people with ME and for this clear statement of support.

2 August 2013

Research Team for Rituximab Study - Statements By Professor Jonathan Edwards and Invest in ME

UK rituximab Trial - Statements By Professor Jonathan Edwards and Invest in ME - July 2013www.investinme.org

Professor Jo Edwards

My interest in ME/CFS was sparked when I was invited, unexpectedly, by IiME to the IiMEC8 Conference in May.

The meeting was impressive: not just professional science, but at a high level. I was particularly impressed that negative findings were given adequate weight.

It became clear to me that there was a community committed to identifying and encouraging the very best research in a difficult and neglected field.

I was aware of the study by Fluge and Mella, using rituximab. I had not been surprised to see some patients respond, but the type of response, which was similar to what we had found in rheumatoid arthritis fifteen years ago, caught my attention. In fact, the situation seemed very reminiscent of the time when we first started to get results with targeted therapy in rheumatoid arthritis. We had the benefit of more immunological clues then, but on the other hand, the experience we have gained over the last decade now makes things easier in other ways.

My limited understanding of ME/CFS is that, like arthritis, it is probably several diseases with similar symptoms. Most colleagues who specialise in ME/CFS seem to agree. What the Fluge/Mella study suggests is that perhaps half of those suffering from these symptoms may have a B cell-dependent autoimmune disease.

A recent study by Dr Amolak Bansal and colleagues also suggests that B cells may be functioning abnormally in a significant proportion of people with ME/CFS.

To me, a key feature of this approach, unlike chasing one particular virus or gene, is that, if confirmed, it will provide a broad base for understanding disease mechanisms.

Even if rituximab is a cumbersome treatment in the short term its use may not only help a good proportion of patients directly but also begin to show us how to divide ME/CFS into different groups. So it may be useful even for those whose disease does not respond because once separated out from B cell-dependent disease the role of other factors such as NK cell function or cerebral blood flow may become clear.

Looking at the research directions currently being pursued in ME/CFS, I am in no doubt that the usage of rituximab is one of the most promising. There is clearly enthusiasm for further trials. However, rituximab is not an easy drug to use and many doctors do not feel confident with using it. This may explain why studies have been slow to gain momentum outside Norway.

Safe and effective usage requires understanding of B cell life history and function. Each condition has to be considered differently, especially in terms of when treatment is repeated. But with experience its use is very effective and probably as safe as most drugs.

After the IiME Conference I began thinking about my personal experience of patients and friends with ME/CFS. I was sent a copy of ‘Lost Voices ‘ by IiME, which made me think more. It struck me that, whether or not results are positive, further trials of rituximab for ME/CFS should be encouraged not only because impact on life for those affected can be so severe but also because further trials could give clues to disease mechanism. I am retired and would not be personally involved but have suggested to IiME that I would be happy to advise and to encourage others to set up a trial.

My feeling is that a trial should be carried out somewhere with detailed experience in use of rituximab in autoimmune conditions.

The UCL service set up when we started treating rheumatoid arthritis, lupus and a range of other conditions has the most extensive experience.

There is laboratory expertise in B cell immunology under Dr Jo Cambridge.
UCL also has a new Clinical Trials Research Facility with staff appointed to manage trials of this sort.

Importantly, there is enthusiasm amongst local teams for a rituximab ME/CFS trial.

I have suggested to IiME that this would be the ideal centre for such a trial, to be set up in collaboration with clinicians with expertise in ME/CFS from around London, and in particular Dr Bansal.

IiME have accepted this and this is the planned and preferred research base for this trial.

Clinical trials are costly. The trial planned in Norway to confirm the results from Fluge and Mella’s initial trial will cost something like £1-2M pounds. I think it would be most sensible to set up a smaller scale trial initially in the UK with a focus on trying to identify which patients are most likely to benefit. A trial treating about 30 patients, giving useful scientific information should hopefully be feasible for around £3-400,000. Trial design will require careful thought and some further preliminary laboratory work is likely to be needed before it is clear what design would be optimal.

Nevertheless, I am optimistic that a trial could be set up without major delay if funds can be raised. If the role of B cells in at least some ME/CFS, suggested by Fluge and Mella’s study, can be confirmed I think there is a genuine chance of getting to grips with the mechanism of the disease.

From there on things can only get easier.

Statement from Invest in ME:

The statement above from Professor Edwards is an astonishing opportunity for those patients with ME and their families.

To have somebody of Professor Edwards' standing produce such a statement, after agreeing to advise the charity following the IIMEC8 conference, justifies completely the conference theme of Mainstreaming ME Research.

This is a potential breakthrough for state-of-the-art biomedical research into ME.

We believe this study would add great value to other similar research being performed elsewhere.

It would also put the UK into the forefront of ME research.

There is no greater expert able to advise on a trial of rituximab than Professor Edwards who formally established the validity of B cell depletion in autoimmune disorders via his groundbreaking rituximab trials.

At the Biomedical Research into ME Collaborative meeting (BRMEC) organised by Invest in ME and the Alison Hunter Memorial Foundation Dr Jo Cambridge from UCL was invited by the charity to attend and present to the 40 researchers from nine countries gathered in London for the meeting. We felt it important to get the best advice possible to help with this area of ME research. Dr Cambridge added an enormous amount to the meeting – followed by a sincere and positive approach to progressing research.

UCL, as Professor Edwards has explained, has first-class facilities and we believe this opportunity is unique in the UK.

If the UK patient community wish to have a rituximab study then this is as good as it gets.

With the clinical team and Dr Cambridge at UCL performing this work, and with Professor Edwards as advisor, we are sure that a huge leap in understanding ME will be possible.

IiME have managed to work with the experts to set up this possibility. As Professor Edwards states “a trial could be set up without major delay if funds can be raised”.

Our fundraising campaign now must begin in earnest.

We invite everyone to get behind this UK rituximab study and support us.

We welcome contributions from other organisations and companies and individuals. The quality of the researchers and the facilities is beyond doubt.

IiME will contact other organisations to invite them to donate to this cause. One organisation has already indicated it will support a rituximab trial and we have had a pledge from another organisation to help. 

We now have the researchers willing to perform this trial in the UK.

The quality of the researchers and the facilities at their disposal place the capability of the UCL team to perform this trial beyond doubt.

What Next?

There is enthusiasm for setting up a study at UCL.

UCL can take this forward in collaboration with Dr Bansal and with close liaison, including visits, with Bergen. This has been agreed.

A meeting has been arranged for Professor Edwards to visit Bergen to discuss with Dr Fluge.

Further trips by the UCL team would be a possibility and will be arranged by the charity.

We welcome this as this will undoubtedly help both the Norwegian and the UK studies.

We need to raise funding for this study so we urge all our supporters, and others who wish to have a UK rituximab trial or wish to advance biomedical research into ME, to raise awareness and interest from as many sources as possible and support us in this venture.

This UK rituximab study has been initiated by IiME and the UCL staff who were at our conference and BRMEC research meeting.

The best research team possible to undertake this trial is able to perform this.

We need now simply to fund this.

Please support us in this venture.


This is all wonderful news and our immensely grateful thanks go to Professor Edwards and Invest in ME, Dr Cambridge and the UCL team, Dr Bansal, Professor Mella, and all involved in planning this important research.  Now all we have to do is help fund it so - Let's do it for ME!    

UPDATE from IiME: "Thanks to everyone supporting us with this.  We have had a pledge from another organisation to help.  More details later.  We will be contacting other organisations and support groups to ask for their support for our project".

Professor Edwards: "
 IiME take the credit for having knocked the right heads together and got them thinking of getting something up and running - pretty impressive to my mind, because there are all sorts of reasons why those people might choose some easier things to think about! So now what we need is for everyone to do what they can.  Dr Shepherd has indicated his enthusiasm for doing what he can. If we can get the MRC interested now or later that will help"

Dr. Charles Shephered: "I hope this is clear: Invest in ME should be congratulated for what they have done here."

To donate to the IiME UK Rituximab Research Fund - click here