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Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

Sasha and Simon preview the attractions and tells you how you can watch it unfold …

This Friday, 29 May sees the tenth International ME Conference put on by UK research charity Invest in ME (IiME) in London. The day-long conference will include 220 participants from 17 countries and will be attended by researchers, clinicians and patients.​

london-by-night-735085_1280The conference has grown from small beginnings to being one of the most important events on the international ME research calendar, not least because it’s preceded by a two-day, invitation-only research colloquium — now in its fifth year — where some of the world’s top ME researchers can put their minds together and make things happen.

IiME used their 2013 colloquium to gather researchers who might be interested in a UK replication of the exciting rituximab trial results seen in Norway and their initiative paid off.

A University College London team, led by Jo Cambridge and advised by Emeritus Professor Jonathan Edwards, took up the challenge to do a UK trial and IiME began a wildly successful, ongoing crowdfund for the research which has raised a spectacular £380,000 ($590,000, €530,000) so far.

So, we can expect big things. The colloquium happens behind closed doors but the conference doesn’t, and Mark Berry from Phoenix Rising will be in the audience, preparing an in-depth article about the research (his 2013 coverage is here, and 2014 here and here). He and others will be tweeting for Phoenix Rising so that you can follow the presentations live.

Professor Olav Mella (left) and Dr Oystein Fluge

Professor Olav Mella (left) and Dr. Oystein Fluge

The stars of the show are likely to be Oystein Fluge and Olav Mella with the latest from Norway on the new, multi-centre rituximab trial, with Jo Cambridge reporting on B-cell profiling aimed at identifying likely responders in the forthcoming IiME UK rituximab trial.

Other highlights include John Chia on how enteroviruses might cause ME/CFS, Mady Hornig on markers of immunity and metabolism, Betsy Keller on molecular markers before and after exercise and Louis Nacul on ME/CFS population rates.

There’s also brain-immune communication, proteomics explained, an update from Down Under by Sonya Marshall-Gradisnik, and Amolak Bansal on better diagnosis. Professor Ian Charles will deliver the keynote address, on what a research park can do to solve a chronic illness.

The full programme is as follows:

08.55    Dr. Ian Gibson   Conference Opens
09.05    Professor Ian Charles   (Keynote Speech) Solving ME: What a Research Park Has to Offer in Resolving a Chronic Disease
09.30    Professor Mady Hornig   Markers of Immunity and Metabolism in ME/CFS
10.00    Professor Jonas Bergquist   Proteomics in ME/CFS
10.25     Refreshments Break
10.50    Dr. Luis Nacul   Incidence and Prevalence of ME
11.15     Dr. Amolak Bansal   Diagnosis and Differential Diagnosis: Combining clinic and research
11.45     Professor Sonya Marshall-Gradisnik, Dr Don Staines   (To be confirmed) Update from National Centre for Neuroimmunology and Emerging Diseases – NCNED
12.15      IiME Projects    Student Researchers: The Next Generation
12.40     Lunch
13.40     Dr. Jo Cambridge  B-cell biology and ME/CFS
14.05     Dr. Neil Harrison   Immune-Brain Communication and Relationship to Inflammation
14.30     Dr. John Chia   ME and Chronic Enterovirus Infection: An Update on pathogenesis.
14.55     Dr. Claire Hutchinson   Biomarkers for ME: Visual Processing and ME/CFS
15.20     Refreshments break
15.50     Professor Betsy Keller   Molecular markers before/after exercise /Activity guidelines to avoid symptom flares
16.15      Dr. Oystein Fluge, Professor Olav Mella   Multi-centre Rituximab Clinical Trial for ME/CFS
17.10     Plenary   Will ME Be Treatable/Cured?
17.30     Dr. Ian Gibson   Adjourn

Until 31 May you can get an ‘early bird’ price on Invest in ME’s DVD of the conference, which will be released in July.

And, of course, feel free to donate to IiME’s research! They have a general biomedical research fund, a rituximab trial fund, and a fund for a study on the gut, looking at the microbiome and gut-wall permeability (‘leaky gut’).

This is a small charity that punches well above its weight and is well worth supporting.

So, we’ve got something to look forward to on Friday — and don’t forget to tune in for Phoenix Rising’s live tweeting from the ringside.

Let’s hope for a conference to remember!

Donate to Phoenix Rising – help keep the lights on!

{ 210 comments… add one }

  • Sasha May 28, 2015, 1:32 am

    Must admit I wish someone would tweet from the colloquium! It's on its second day now, before the conference tomorrow.

    The suspense is killing me! :woot:

  • sproggle May 28, 2015, 2:23 am

    Agreed on the suspense :) It is important the colloquium is a closed two day meeting so the participants can speak completely freely and gain the most benefit from it – would love to be a fly on the wall though!

    Just heard from Invest in ME that it's going well and they have 220 participants from 17 countries. Not bad for a small charity with a big cause.

  • Sasha May 28, 2015, 3:08 am
    sproggle

    Agreed on the suspense :) It is important the colloquium is a closed two day meeting so the participants can speak completely freely and gain the most benefit from it – would love to be a fly on the wall though!

    Just heard from Invest in ME that it's going well and they have 220 participants from 17 countries. Not bad for a small charity with a big cause.

    Yes, I agree the colloquium is best as a closed meeting but I'd love to be the fly on the wall next to you!

    That's a spectacular attendance – very impressive indeed.

  • sproggle May 28, 2015, 3:17 am

    P.S. IiME are now tweeting on day 2 of the colloquium, as well as continuing to post in their Facebook group. There is more content (including photos) from day 1 on Facebook, here's the BRMEC5 thread started yesterday – https://www.facebook.com/groups/5804522506/permalink/10152916558012507/

    I believe both are publicly accessible without needing to sign-up. Their twitter page https://twitter.com/Invest_in_ME and Facebook https://www.facebook.com/groups/5804522506/

  • Sasha May 28, 2015, 3:28 am

    Thanks, @sproggle – for some weird reason, your links don't seem to be working so I'll repost them here:

    https://www.facebook.com/groups/5804522506/permalink/10152916558012507/

    https://www.facebook.com/groups/5804522506/

    and I see they're already posting on Twitter:

    https://twitter.com/search?q=invest_in_me

  • garcia May 28, 2015, 3:31 am

    Why isn't there any patient representation at the "two-day, invitation-only research colloquium"?
    Surely patients should have a voice and a say into how and what research is conducted into our disease?

  • Jo Best May 28, 2015, 4:43 am
    garcia

    Why isn't there any patient representation at the "two-day, invitation-only research colloquium"?
    Surely patients should have a voice and a say into how and what research is conducted into our disease?

    Patient involvement is ongoing and is also implicit in the fact that these events are organised by a charity that's run by patients and parent/carers. The focus of 10 years of conference day (IIMEC) has been on patients, clinicians and researchers discussing and working together, whereas the colloquium (BRMEC) is a development from that and is an opportunity for the researchers themselves to get down to the business of discussing work and planning collaborations. This format is working very well for patients, going by the outcomes of the past 5 to 10 years.

  • Bob May 28, 2015, 7:32 am
    garcia

    What patient oversight or involvement is there into any of this? I only ask because I'm not a big fan of the paternal top-down "this is what we think is best for you" model of research or charity. I believe patients should be involved / consulted at every stage including research.

    Invest in ME is a small grass-roots charity run purely by volunteers. The people who run Invest in ME have the illness in their family. The conferences have been occurring for a number of years now, and it's possible to buy DVDs of the conferences. The DVDs have been an invaluable source of information for me, especially in the early years of my illness when I was struggling to find information or connections with people who knew about ME.

    Invest in ME are very focused on supporting patients, and in achieving useful outcomes. They are constantly in touch with patients and do a lot of work for the patient community, and unseen work for individual patients.

    The colloquium came about organically, because the conference organisers found that the attendee researchers were developing useful relationships and powerful research alliances through networking at the conference, so they decided to set aside some formal time to enable and facilitate further networking between researchers. They've obviously found this to be a very productive part of the conference as they've extended it to a two day event this year, with a large number of researchers present by the sound of it.

    I hear what you say about patient involvement, but this is a privately organised event that works for the organisers and attendees. Invest in ME find it to be a highly successful format, where researchers can network, swap notes, share their confidential results, form relationships and alliances etc., in a fairly private setting. It works, so I guess they don't feel a need to change it. As far as I understand, it's not so much about organising research, per se, as allowing researchers to get to know each other and to build friendships and partnerships. Clearly this works very well in the current format.

    I forget which researchers have met and built partnerships at the conference in the past, but there have been some very well known ME researchers who have met there and formed relationships. Invest in ME thought that there was great advantage in this for our community, so created more time and space for this networking to flourish.

    Invest in ME has a great deal of good will from patients in the UK. They're not a corporate type charity.

  • mango May 28, 2015, 7:43 am
    garcia

    What patient oversight or involvement is there into any of this?

    I just want to mention that there is at least one patient representative present at the colloquium, a woman from RME Sweden ( = the Swedish ME association, which is a member of European ME Alliance and Nordic ME Network).

  • garcia May 28, 2015, 7:52 am
    mango

    I just want to mention that there is at least one patient representative present at the colloquium, Lisa Forstenius of RME Sweden ( = the Swedish ME association, which is a member of European ME Alliance and Nordic ME Network).

    Thanks Mango! It's great that at least one patient was there. It's a shame that there weren't any UK patients invited though.

  • Bob May 28, 2015, 8:14 am

    This is great… I've just come across this, so I thought i'd slip it in this thread…

    It's for UK residents.

    You can donate clothes & accessories to benefit Invest in ME. (Invest in ME get £200 for every ton of clothes/accessories donated.)

    I'm always wondering what to do with unwanted clothes – because I can't get to charity shops at the moment, and it's always a hassle to carry a big bag of clothes into town anyway. (Not that I have an extensive wardrobe, but I don't like throwing old clothes into the bin.)

    This company will provide you with a bag and then collect your clothes by courier, via appointment, direct from your home or work.

    Seems like a great scheme.

    This is Invest in ME's page:
    http://www.clothesforcharity.org.uk/charities/donate/invest-in-me/

    And general info on the scheme can be found on the homepage:
    http://www.clothesforcharity.org.uk

    Edit: it's rightly been pointed out to me that £200 per ton of clothes isn't a massively beneficial deal. It's better than nothing, but it's not a huge amount. So if u have good quality or expensive items to get rid of then it might be wise to try to sell them on eBay, or find other ways to sell them. I've been told that even ordinary second-hand clothing can make a bit of money on eBay. I was thinking along the lines of using the service for clothes that I would otherwise throw out or take to a charity shop.

  • Sasha May 28, 2015, 8:55 am
    Bob

    This is great… I've just come across this, so I thought if slip it in this thread…

    It's for UK residents.

    You can donate clothes & accessories to benefit Invest in ME. (Invest in ME get £200 for every ton of clothes/accessories donated.)

    I'm always wondering what to do with unwanted clothes – because I can't get to charity shops at the moment, and it's always a hassle to carry a big bag of clothes into town anyway. (Not that I have an extensive wardrobe, but I don't like throwing old clothes into the bin.)

    This company will provide you with a bag and then collect your clothes by courier, via appointment, direct from your home or work.

    Seems like a great scheme.

    This is Invest in ME's page:
    http://www.clothesforcharity.org.uk/charities/donate/invest-in-me/

    And general info on the scheme can be found on the homepage:
    http://www.clothesforcharity.org.uk

    I wish I'd known about that before (not that I have a ton of clothes!). I wonder if it's a new thing for them?

  • jimells May 28, 2015, 9:10 am
    Sasha

    The stars of the show are likely to be Oystein Fluge and Olav Mella with the latest from Norway

    Haha, they don't look much like stars! 😀

    But I'd love to have an autographed copy of that photo to hang on the wall! :D:D

  • Bob May 28, 2015, 9:11 am
    Sasha

    I wish I'd known about that before (not that I have a ton of clothes!). I wonder if it's a new thing for them?

    I only came across it today, so I think it's very recent. I haven't seen them promote it much – I've just seen one tweet about it so far.

  • Sasha May 28, 2015, 9:14 am
    jimells

    Haha, they don't look much like stars! 😀

    But I'd love to have an autographed copy of that photo to hang on the wall! :D:D

    I don't know, I think they look quite starry! But as long as they know what they're talking about (which they do!) I'm not too bothered! :)

  • Sasha May 28, 2015, 9:15 am

    Not long now to the conference… :woot::woot::woot:

  • jimells May 28, 2015, 9:20 am
    Bob

    As far as I understand, it's not so much about organising research, per se, as allowing researchers to get to know each other and to build friendships and partnerships.

    Speed dating for researchers! I think it's a brilliant idea. It's certainly more useful than 30 years of NIH bleating, "There's no researchers to fund"

  • Sasha May 28, 2015, 9:28 am

    I believe the rituximab trial got into action at one of the colloquia. @Jonathan Edwards can correct me if I'm wrong.

    A talking shop like that for researchers is crucial. It's where ideas get swapped and alliances get forged.

  • jimells May 28, 2015, 9:36 am
    Sasha

    Not long now to the conference… :woot::woot::woot:

    Yup. Never thought I'd get excited about a medical conference. Now I look forward to maybe hearing a potentially useful tidbit.

    I can't wait for the release on DVD. How about a movie poster to go with it? :p

  • Bob May 28, 2015, 2:23 pm

    Rest well tonight everyone. It's gonna be a hectic day tomorrow, keeping up with tweets, forum threads, hopefully lots of exciting news and perhaps even hints about unpublished research outcomes!

  • snowathlete May 28, 2015, 6:09 pm
    Bob

    This is great… I've just come across this, so I thought if slip it in this thread…

    It's for UK residents.

    You can donate clothes & accessories to benefit Invest in ME. (Invest in ME get £200 for every ton of clothes/accessories donated.)

    I'm always wondering what to do with unwanted clothes – because I can't get to charity shops at the moment, and it's always a hassle to carry a big bag of clothes into town anyway. (Not that I have an extensive wardrobe, but I don't like throwing old clothes into the bin.)

    This company will provide you with a bag and then collect your clothes by courier, via appointment, direct from your home or work.

    Seems like a great scheme.

    This is Invest in ME's page:
    http://www.clothesforcharity.org.uk/charities/donate/invest-in-me/

    And general info on the scheme can be found on the homepage:
    http://www.clothesforcharity.org.uk

    Edit: it's rightly been pointed out to me that £200 per ton of clothes isn't a massively beneficial deal. It's better than nothing, but it's not a huge amount. So if u have excellent quality or expensive items to get rid of then it might be wise to try to sell them on eBay, or find other ways to sell them. I was thinking along the lines of using the service for clothes that I would otherwise throw out or take to a charity shop.

    I think this is great, thanks for posting about it.

  • Sasha May 28, 2015, 11:01 pm

    It's nearly tiiiiiiiiiime….

    1 hour, 55 minutes to go…

    :woot::woot::woot:

  • Sasha May 28, 2015, 11:11 pm

    Somebody giving £10 to IiME to celebrate 10 years of conferences:

    https://twitter.com/sproggled/status/603479750066216960

    Sounds like a plan!

    Here's their general biomedical research fund, their rituximab trial fund,and their fund for a study on the gut.

  • Kati May 28, 2015, 11:18 pm

    45 minutes till happy hour. Nearing my bedtime too :sluggish:

    Best wishes to all attendees especially patients. Take good care of yourselves, keep hydrated and fed. Looking forward to good news.

  • Sasha May 28, 2015, 11:31 pm

    Here's Phoenix Rising's Twitter link again:

    https://twitter.com/aboutmecfs

    Is anyone else tweeting from the conference, that we know of?

  • Sasha May 29, 2015, 12:53 am

    Phoenix Rising just started tweeting! :woot:

    Mark is sharing the tweeting with others – not sure at any point who is doing the tweeting. 😎

  • Sasha May 29, 2015, 1:09 am

    Interesting! Ian Gibson is writing a book about the politics of ME.

  • Sasha May 29, 2015, 1:20 am

    Does anyone have the power to tweet back?!

    I want to know what is meant by the tweet about Mady Hornig's talk: 'NIH – planning a new microbiome/immune profiling study'.

    Who? What?

  • Kina May 29, 2015, 1:27 am
    Sasha

    Does anyone have the power to tweet back?!

    I want to know what is meant by the tweet about Mady Hornig's talk: 'NIH – planning a new microbiome/immune profiling study'.

    Who? What?

    Hornig was talking about up and coming research she, and her co-researchers, are going to be involved in — so it would appear it is being funded by the NIH.

  • Scarecrow May 29, 2015, 1:44 am

    Discussing interesting embargoed information — sorry can't tweet about it.

    This was tweeted just before the end of Mady Hornig's talk.

    Rats! I hate it when they do that. I can't stand the suspense.

  • Sasha May 29, 2015, 1:46 am
    Scarecrow

    This was tweeted just before the end of Mady Hornig's talk.

    Rats! I hate it when they do that. I can't stand the suspense.

    On the other hand, it suggests there's something worth waiting for that's soon going to be published… but yes, the suspense!

  • Never Give Up May 29, 2015, 1:58 am
    Sasha

    On the other hand, it suggests there's something worth waiting for that's soon going to be published… but yes, the suspense!

    How does it usually go with the later release of embargoed info? Are they waiting for journal publication? Waiting for more analysis to be done? How long does it usually take?

  • Scarecrow May 29, 2015, 2:03 am

    More embargoes but looks promising:

    Professor Jonas Bergquist has finished his presentation. Hopefully the embargoed study will be published soon — very exciting.

  • Simon May 29, 2015, 2:08 am
    Scarecrow

    Discussing interesting embargoed information — sorry can't tweet about it.

    This was tweeted just before the end of Mady Hornig's talk.
    Rats! I hate it when they do that. I can't stand the suspense.

    When stuff is embargoed at a conference, it's usually fine to tweet what's embargoed eg a metabalome study (my guess in this case), without giving any results.

    Btw, can easily be a year between conference presentation and paper publication, that was certainly the case with the Drs Hornig/Lipkin cytokine study.

  • Scarecrow May 29, 2015, 2:08 am
    Never Give Up

    How does it usually go with the later release of embargoed info? Are they waiting for journal publication? Waiting for more analysis to be done? How long does it usually take?

    I suppose that's a 'how long is a piece of string' question. Definitely as long as six months (but could be sooner).

    Any advance on six months? [Edited – see above!]

  • Bob May 29, 2015, 2:12 am
    Never Give Up

    How does it usually go with the later release of embargoed info? Are they waiting for journal publication? Waiting for more analysis to be done? How long does it usually take?

    It usually means that they've completed their study, and have the results, and are going through the publication process. Unfortunately that usually takes anything from a few months to a year to be completed. But I suppose it might just mean that they've got some preliminary results that they aren't ready to share publicly, and haven't even submitted them for publication yet.

    Edit: ah, I see this has already been answered. crossed posts.

  • Scarecrow May 29, 2015, 2:12 am

    Now, this is a very insightful comment:

    Professor Jonas Bergquist says when routine tests don't reveal abnormalities, more sensitive testing needs to occur.

  • Never Give Up May 29, 2015, 2:14 am

    Drat!

  • eafw May 29, 2015, 4:48 am
    Sasha

    Until 31 May you can get an ‘early bird’ price on Invest in ME’s DVD of the conference, which will be released in July.

    Ordered, but am looking forward to whatever summaries and info we can get beforehand.

  • Sasha May 29, 2015, 5:23 am

    It's lunchtime…

    Well done, @Mark and the other tweeters! You're the next best thing to us all being there. Really, really appreciate it. :thumbsup:

  • Simon May 29, 2015, 7:21 am
    Instant replay:
    Dr Jo Cambridge on B cells & Rituximab

    not-quite-instant collation of conference tweets from Phoenix Rising

    @aboutmecfs said:

    > Jo Cambridge will now talk about B-cel biology and B-cell depletion

    > Interested in identifying best responders to Rituximab and predicting who is going to relapse.

    > B-cell receptor = antibody [membrane bound version of antibody]

    > Antibodies come in different shapes and sizes — IgM, IgA, IgG plus 2 others

    > Looking at a slide of a B-cell — quite complicated.

    @sjmnotes > ha ha ha this B & T cell pic from Wikipedia probably oversimplifies
    [​IMG]
    > Antibodies bind antigens.

    > When you encounter a 'bug', IgM is produced and then IgG.

    > B-cell recognizes an antigen and shows it to a T-cell. T-cell makes cytokines which helps the B-cell produce antibodies.
    [see that picture above]

    > Discussing cytokine research and why it is helpful in their research.

    > Rituximab affects antibody production, cytokine production, depletes circulating B-cells.

    > Treatment with Rituximab is complicated, very complicated.

    > ME/CFS and B-cells — there is no clear picture from research.

    new results!

    > They compared cohorts from 2 different centers. Measuring B-cell phenotype using flow cytometry.

    > Compared controls to ME patients.

    > Percentage of B-cells were the same in both groups. Found differences with CD24 and CD38-CD21 between the groups.

    > Higher CD24 percentage in patients,

    > Working closely with Fluge and Mella.

    === ends

  • Scarecrow May 29, 2015, 9:04 am

    Bumping to highlight that:

    Next — Dr Oystein Fluge / Professor Olav Mella will be discussing Multi-centre Rituximab Clinical Trial for ME/CFS

  • Sasha May 29, 2015, 9:06 am
    Scarecrow

    Bumping to highlight that:

    Drumroll… :woot::thumbsup::woot::thumbsup::woot:

  • Scarecrow May 29, 2015, 9:11 am

    I suspect another embargo:

    Phase two study to be published in two to three weeks.

    At least we won't have long to wait. :)

  • Bob May 29, 2015, 9:15 am

    Unfortunately, two to three weeks usually seems to translate to six months, in the research publishing world! :(

  • Scarecrow May 29, 2015, 9:19 am
    Bob

    Two to three weeks usually seems to translate to six months, in the research publishing world!

    :aghhh:

    We'll see. Actually, they did give a fair bit of information but nothing new, I think.

  • Simon May 29, 2015, 9:31 am
    Instant replay!
    Profs Oystein Fluge and Olav Mella with the latest from their large Rituximab trial

    not-quite-instant collation of conference tweets from Phoenix Rising

    @aboutmecfs said:

    > Professor Olav Mella — giving a brief background of the research starting with improvement of ME patient after taking Rituximab

    > Patient given the drug — response after 7 months which lasted for 4-5 months.

    > Two more patients responded to Rituximab.

    > Decided to do a small study with 30 patients.

    > Phase two study to be published in two to three weeks.

    > Present Phase 2 study confirmed results from the 2011 study.

    > Marked improvement in physical function after 15 months. Transient worsening after Rituximab in about 20 percent of patients.

    > ME is caused by a malfunctioning of the immune system if underlying immune defect is corrected.

    > Maintenance therapy can give prolonged duration of response — up to 24 months into the study.

    > Next, they want to confirm or refute that B-lymph depletion with Rituximab may result in a clinically significant response in patients

    > anywhere from 2 to 15 years in ME patients.

    >Talking about recruitment of patients at each of the 5 centres. Blood tests to exclude other conditions. Biobank material … .

    > Double-bind randomized study.

    > Summer of 2017 will be when the Phase 3 study will likely be completed.

    > Block Randomization to ensure equal number — treatment vs placebo

    > Rituximab 500 mg/m2 given at day 0 and 15, then 500 mg flat dose at 3 mths, 9 mths and 12 mths. Patients will monitor symptoms.

    > Blood samples will be drawn for biobank freezing at regular intervals.

    > Standardized, self-recorded scoring of fatigue and all major disease symptoms throughout follow-up.

    > Measuring changes in quality of life — measured by SF36.

    > Changes in physical performance measured by electronic armbands.

    > Sub-study — to see if there is evidence of endothelial dysfunction in ME patients that they found in earlier studies.

    > Is there a correlation between severity of ME and endothelial dysfunction.

    > Also will look at GI function as a sub-study.

    > Study officially opened in Sept 2014. Two centres have finished recruitment. Infusions should start at all centres by the end of this summer

    > What do they expect to find? Goal – a high quality study that gives a true answer to the questions asked.

    > The medical community needs to trust the results. There will be a sub-group that responds.

    > The response of the placebo group will be very important.

    > Talking about political impact of study — have gotten public financing, hospitals are cooperating — learning about ME

    > Also are getting private financing. Support from the Kavli foundation (their lifeline). A lot of public interest…. Spawning further research.

    > Now talking about toxicity of Rituximab. Toxicity needs to be considered.

    > Cost is important too.

    > These studies are helping to change the public view of ME.

    > They are doing other studies that haven't been published yet — won't say anything about it.

    > Looking at the possibility of using cyclophosphamide for those who can't tolerate Rituximab — 3 patients — 2 have responded positively.

    > Cheaper than Rituximab — may be the drug of choice — recently have started a 40 patient study.

    > 3 groups — have had no response to Rituximab, those who haven't been treated with Rituximab, those who Rituximab stopped working.

    > Started in March 2015.

    > Very sick patients can be included in this trial.

    > Olav Mella is now thanking Invest in ME for inviting him as they are 'the best' and is very impressed with IiME.

    > And he thanked the patients — most of their ideas come from listening to what the patients tell them.

    Thanks for epic tweeting from Phoenix Rising

  • aimossy May 29, 2015, 9:58 am

    These guys know all about ethics… absolute stunners! Thanks @Simon .

  • aimossy May 29, 2015, 10:06 am

    What does this mean do you think, my brain is just done in now.

    " Marked improvement in physical function after 15 months. Transient worsening after Rituximab in about 20 percent of patients."

    Does this mean that after they have been through the process and the b cells come back again 20% got transiently worse or that 20% get transiently worse while receiving treatments? Hopefully someone might be clear on this.

  • Sasha May 29, 2015, 10:07 am

    It's gone very quiet… I guess that's it!

    Many, many thanks to our sore-thumbed tweeters! Hope you're not worn out, @Mark!

    Can't wait for that Fluge & Mella paper now…