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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!
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{ 210 comments… add one }

  • aimossy May 29, 2015, 10:10 am

    There was a fair bit to look forward to I think. Thanks a lot @Mark !

  • Snow Leopard May 29, 2015, 10:14 am

    Thanks to @Kina and the other twitterers

  • Scarecrow May 29, 2015, 10:14 am
    Sasha

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

    They're running a bit late. They've scheduled a 20 minute plenary. Then there's the closing remarks from Ian Gibson, which was originally to have been at 5:30 but will probably be anytime now.

  • mango May 29, 2015, 10:25 am

    big warm thanks to everyone involved! super appreciated! <3 :)

  • Sasha May 29, 2015, 10:30 am
    Scarecrow

    They're running a bit late. They've scheduled a 20 minute plenary. Then there's the closing remarks from Ian Gibson, which was originally to have been at 5:30 but will probably be anytime now.

    Oh! Spoke too soon…

  • Scarecrow May 29, 2015, 10:39 am
    Sasha

    Oh! Spoke too soon…

    Maybe not. Still no new tweets. Perhaps they finished quickly.

  • jimells May 29, 2015, 10:42 am

    @Simon I found your summaries to be very helpful. I tried to read something on Twitter once, and found I couldn't really decipher it.

  • mango May 29, 2015, 10:51 am

    i've copied all of @Mark's tweets today into a plain text document and sorted them so they aren't in reverse order. i find them much much easier to read that way. i could post them here, if it would be okay with mark?

  • Sasha May 29, 2015, 11:02 am
    mango

    i've copied all of @Mark's tweets today into a plain text document and sorted them so they aren't in reverse order. i find them much much easier to read that way. i could post them here, if it would be okay with mark?

    I'm sure he'd be only too happy to make it easy for us all!

    I for one would thank you, @mango! :thumbsup:

  • mango May 29, 2015, 11:10 am
    Sasha

    I'm sure he'd be only too happy to make it easy for us all!

    i've asked him on twitter, let's hope he sees it and replies. if not, maybe i could send it to you in a pm?

    he's done such an amazing job today! wouldn't want to upset him in any way..!

  • Sasha May 29, 2015, 11:14 am
    mango

    i've asked him on twitter, let's hope he sees it and replies. if not, maybe i could send it to you in a pm?

    he's done such an amazing job today! wouldn't want to upset him in any way..!

    Yes, perhaps I'm rash in speaking for him, especially after he's done such a sterling job!

  • Bob May 29, 2015, 11:43 am
    aimossy

    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.

    I wondered about that as well. I took it to mean that 20% of patients deteriorated after receiving rituximab. I'm not sure what they mean by 'transient' – does it mean that there was a limited period during which symptoms actively deteriorated, or that the down-turn in health was short-lived and reversed after treatment?

  • Kina May 29, 2015, 11:50 am
    Scarecrow

    Maybe not. Still no new tweets. Perhaps they finished quickly.

    They were overtime so no plenary and no closing statements.

  • Kina May 29, 2015, 12:00 pm
    Bob

    I wondered about that as well. I took it to mean that 20% of patients deteriorated after receiving rituximab. I'm not sure what they mean by 'transient' – does it mean that there was a limited period during which symptoms actively deteriorated, or that the down-turn in health was short-lived and reversed after treatment?

    I think it meant that the deterioration was short-lived and did not last.

  • Kina May 29, 2015, 12:05 pm
    mango

    i've copied all of @Mark's tweets today into a plain text document and sorted them so they aren't in reverse order. i find them much much easier to read that way. i could post them here, if it would be okay with mark?

    It wasn't Mark tweeting. It was me. It's a real eye opener and very exciting for me to be able to attend IiME. You can do whatever you want with my tweets except call me an idiot because I got things wrong or misinterpreted something. It's all very hard on me, I am exhausted. Time to crash. Mark was taking extensive notes for his article.

  • PDXhausted May 29, 2015, 12:06 pm
    Kina

    It wasn't Mark tweeting. It was me. It's a real eye opener and very exciting for me to be able to attend IiME. You can do whatever you want with my tweets except call me an idiot because I got things wrong or misinterpreted something. It's all very hard on me, I am exhausted. Time to crash. Mark was taking extensive notes for his article.

    Huge thank you!!

  • mango May 29, 2015, 12:09 pm
    Kina

    It wasn't Mark tweeting. It was me.

    thank you! you did an absolutely amazing job, kina! i have no negative feedback at all, just lots and lots of gratitude! :heart:

  • Kina May 29, 2015, 12:12 pm

    Thanks @mango My faith in ME researchers was renewed today. These people are amazing.

  • mango May 29, 2015, 12:16 pm

    Tweets by Kina/Phoenix Rising on Twitter https://twitter.com/aboutmecfs

    Invest in ME\Conference — starting in 10 minutes.

    Dr Ian Gibson is the Conference chair.

    [@meassociation/ME Association on Twitter: “That's former Norwich MP Dr Ian Gibson – who is closely involved with the IiME conferences”.]

    Conference has officially started.

    Dr Ian Gibson — What a Research Park Has to Offer in Resolving a Chronic Disease such as ME.

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

    Research is really beginning to 'move' as evidenced by the past few days here at the Conference..

    Introducing Mady Hornig who is then next speaker.

    Mady Hornig — Markers of Immunity and Metabolism in ME/CFS

    Three strikes hypothesis — intersection of genes, environment, and timing causing chronic illnesses like ME.

    NIH — planning a new microbiome/iimune profiling study.

    Talking about their recently pulished study.

    Subjects with more recent onset have increased plasma levels of proinflammatory cytokines. Timing is important.

    Trying to understand immune signatures and how they can be applied to patients re: possible treatments.

    Looked at 51 different cytokines.

    They also looked at cerebral spinal fluid of patients. There is a reduction in proinflammatory cytokines in the long duration group.

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

    Mady Hornig has concluded her talk.

  • mango May 29, 2015, 12:18 pm

    Tweets by Kina/Phoenix Rising on Twitter https://twitter.com/aboutmecfs

    Professor Jonas Bergquist — Proteomics in ME/CFS

    Proteomics is the large-scale study of proteins, particularly their structures and functions.

    Talking about High Resolution Mass Spectometry and protein analysis.

    Many proteins occur at extremely low level so it is very important to get the 'right sample'

    Cerebrospinal fluid is their interest. We produce 5-600 ml per day of CSF. Samples via lumbar puncture. They have established the proteome of normal CSF. Healthy individuals vs ME patients — there are differences.

    Low grade inflammatory reaction in ME patients, dysfunction in axonal guidance.

    More embargoed information — sorry.

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

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

    Prof Ian Charles

    Professor Ian Charles speaking now.

    Solving ME: What a Research Park Has to Offer in Resolving a Chronic Disease

    Talking about the microbiome.

    Do alterations in the intestinal barrier integrity and the microbiota exist in ME patients?

    Showing a map of the Norwich Research Park — very impressive. Hospital, University and research lab. Has thousands of scientists.

    'Fantastic hub of top-notch researchers'. Publicly funded.

    New centre for food and health will be opened in 2017 on the site.

    A focused single-site centre of excellence from basic to applied research. No equivalent centre either nationally or internationally.

    Dr Ian Charles is very excited about the new centre and how it will have a positive effect on ME research. He has finished his speech.

    Audience member asked how Monsanto Round-Up has effected the microbiome. Answer — nobody knows at this point.

    We need to sort out the chemicals in our environment.

    Break time.

    After the break, Dr Luis Nacul will speak about the Incidence and Prevalence of ME

  • mango May 29, 2015, 12:21 pm

    Tweets by Kina/Phoenix Rising on Twitter https://twitter.com/aboutmecfs

    Dr Amolak Bansal

    Change in presentation order — Dr Amolak Bansal speaking on Diagnosis and Differential Diagnosis: Combining clinic and research

    Dr Amolak Bansal speaking on Diagnosis and Differential Diagnosis: Combining clinic and research

    Discussing the definition of 'fatigue' and symptoms of ME

    PEM is common to everybody with ME.

    People have much difficulty understanding PEM.

    Listing exclusionary criteria.

    Discussing psychiatric exclusion criteria.

    The name SEID is not very 'catchy', criteria are perhaps a bit too simple.

    ME vs CFS — ME have more significant PEM, more cognitive dysfunction … .

    Uses Sutton CFS/ME Scoring system.

    Scoring system is very helpful and accurate for diagnostic purposes.

    All of their study participants must score at least 10 out of 13 points to be included.

    People with ME have abnormal pupil reflexes — the abnormality is usually only found in people with autonomic neuropathy.

    20 percent of patients have joint hypermobility.

    80 percent have increased respiratory rate,

    70 percent have cold peripheries (cold hands, feet).

    Now discussing conditions that can mimic ME — EDS-3, hypothyroidism, Addison's disease, Sjorgen's, gluten sensitivity, sleep disorders.

    cardiac dysfunction, Parkinson's, TMD, persistent anxiety and depression.

    Must diagnose ME vs depression properly — ME patients have adverse reactions to anti-depressants. Depression is very different from ME.

    They do extensive bloodwork when diagnosing patients — ANA, CK, LDH, viral and Lyme disease serology. Also do sleep studies, MRI's.

    Other triggering factors — life events (impairing immune system), physical injuries, environmental toxins

    Now discussing factors that perpetuate chronic fatigue — eg — sleep impacts memory and concentration

    Bonsal has finished speaking.

    Audience member — ME has been buried under 'psychiatric influences'

    Audience member — daughter became ill after HPV vaccine jab. Had severe side-effects to HPV vaccine — is there going to be research?

    There is some research in Scandinavia re: HPV

    Dr Luis Nacul

    Dr Luis Nacul will now speak on the Incidence and Prevalence of ME.

    Nacul believes the puzzle pieces of ME are coming together slowly.

    Getting the epidemilogy of ME right is essential.

    We need to define ME properly.

    There have been 20 different definitions over the years, no wonder researchers are confused.

    SEID is the newest definition — it's not 'specific' enough to be used.

    Prevalence of ME varies depending on what definition is being used. Prevalence even varies within a definition.

    Consistent finding — more common in females, starts in young adults, more disabling than RA, cancer.

    We need to narrow down definitions to be very specific.

    Now discussing management of ME patients — NICE guidelines — CBT and GET — are not appropriate treatments – biased studies … .

    Cochrane conclusion — limited evidence for CBT from poor studies.

    Research priorities — biomarkers, correct epidemiological method — specific case definition.,

    Uk biobank — will include 25 percent of severe patients (will go to them to get blood samples).

    17,000 aliquots stored as of March 2015.

    Audience — PACE trial was a failure, FINE was a failure, FUKUDA needs to go. SEID is not going to catch on — better than CFS but too vague

    Oxford criteria needs to go too.

  • mango May 29, 2015, 12:22 pm

    Tweets by Kina/Phoenix Rising on Twitter https://twitter.com/aboutmecfs

    Prof Sonya Marshall-Gradisnik and Don Staines

    Professor Sonya Marshall-Gradisnik and Don Staines Update from National Centre for Neuroimmunology and Emerging Diseases – NCNED

    Don Staines now speaking — investigation of SNP's in biological receptors in ME/CFS.

    Talking about TRP Receptors

    ACTH is a vital CNS transmitter.

    Professor Sonya Marshall-Gradisnik now speaking.

    Explaining — Cells, Genes, and SNP's

    Describing particpant recruitment — n = 280 115 ME patients, 90 non-fatigued cotrols, exclusions = 75

    Two parts of the study TRPM3 SNP's and ACTH SNP's

    9 SNP's in ME group — TRPM3 SNP's

    2 SNP's were TRPA1, 2 SNP's were TRPC4

    Therefore, 13 SNP's significantly associated with CFS group.

    Also found significant associations with ACTH SNP's

    17 SNP's in total significantly associated with ME/CFS patients.

    What does this mean?

    TRPA1 — has a role in the regulation of neuropeptides, as well as pain and inflammation

    TRPM3 is located in the central nervous system — associated with pain in the absence of tissue damage, also a thermoregulatory sensor.

    TRPC4 — responsible for vasomotor function and smooth muscle funcition, memory and attention, and motor control

    Present on immune cells — ME patients have significant reduction in immune cell function.

    ACTH SNP's — AChR SNP's — located in the GI tract, regulate insulin secretion, involved in arousal and sleep and fatigue, pain, memory.

    Also involved in cognition.

    Showing a diagram of the cell membrane.

    Looking at TRP receptors on the diagram.

    Professor Sonya Marshall-Gradisnik is winding up her speech about the SNP's common to ME patients.

    Professor Simon Carding

    Now Professor Simon Carding — IiME Projects – Student Researchers The Next Generation

    Students to say what they are working on — Daniel — first IiME funded PhD student at Norwich.

    Studying gut microbiota

    This area of science and how it relates to human disease has 'exploded' since 2009..

    Looking at increased gut permeability in ME.

    Lavina — a medical student — her project is the gut microbiota — has potential to answer a lot of questions related to ME.

    Another student speaking — didn't catch name — assessing autoimmunity against neuronal antigens. Working with Angela Vincent at Oxford

    Another student Fane, works with Jo Cambrige. He is really pleased to be part of this research group.

    Audience can now ask students questions.

    Audience member asking about how to measure gut permeability. Daniel says they are trying to develop an assay right now.

    Audience member — concept of gut permeability has not been taken seriously by mainstream medicine until recently.

    Gut permeability is now being taken more seriously related to evidence coming from research

    Issue with the NHS in the UK, is there is no specific test for gut permeability which is what they will try to develop.

    After the lunch break, Dr Jo Cambridge is going to speak about B-cell biology and ME.

  • mango May 29, 2015, 12:24 pm

    Tweets by Kina/Phoenix Rising on Twitter https://twitter.com/aboutmecfs

    Dr Jo Cambridge

    Jo Cambridge is now going to talk about B-cell biology and B-cell depletion.

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

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

    B-cell receptor = antibody

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

    When you encounter a 'bug', IgM is produced and then IgG.Antibodies bind antigens.

    B-cell recognizes an antigen and shows it to a T-cell. T-cell makes cytokines which helps the B-cell produce antibodies.

    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.

    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.

    Dr Neil Harrison

    Dr Neil Harrison will now be speaking about Immune-Brain Communication and Relationship to Inflammation.

    How is body inflammation communicated to our brain.

    Talking about 'sickness behaviour'. Activations of host defense mechanisms trigger stereotyped behavioral response.

    Sickness behaviours to infection — examples = fatigue, psychomotor slowing, pain, hypersensitivity

    Pro-inflammatory cytokines induce sickness behaviours.

    Immune brain communication — how are immune signals communicated to the brain? Two main mechanisms — vagus nerve and via areas of the brain where the blood brain barrier is weak.

    Discussing relationship of inflammation and fatigue. Inflammation is correlated with fatigue

    inflammation induced Insula activity predicts fatigue.

    In a viral modal — Hepatitis C patients given Interferon experience marked fatigue as a side-effect.

    Now discussing Magnetization transfer imaging:biomarker for central effects of inflammation

    People receiving Interferon — fatigue increases quickly within 4 hours as shown by the brain imaging data.

    Interferon changes sickness behaviour and brain microstructure within 4 hours.

    Inflammation in the body is rapidly communicated to the brain, induces changes in sickness behaviour,

    Insula and ventral striatum are involved. Outstanding question — what are the implications for ME.

  • mango May 29, 2015, 12:26 pm

    Tweets by Kina/Phoenix Rising https://twitter.com/aboutmecfs

    Dr John Chia

    Next speaker — Dr John Chia — ME and Chronic Enterovirus Infection: An Update on pathogenesis

    Enterovirus infections are quite common. Some remain asymptomatic, others can develop chronic diseases from infection.

    Most dr's are not trained to recognize acute EV infections, are not taught they can cause chronic infections

    Past evidence for EV persistance in ME patients — Nairn, Gow, Cunningham, Douche-Aourik

    Evidence of EV RNA in tissues of ME patient — tissue removed from deceased ME patient who had committed suicide.

    John Chia giving history of his own research related to EV infection. Diagnosed his own son with EV infection in1998.

    Still giving history of his research — 2005 moving from blood to tissues to look for EV — the virus must be in tissues

    Most patients have GI symptoms — most GI specialists have no knowledge of EV infection. The stomach is a primary site of virus replication

    The virus should be present if the patient is having active GI symptoms.

    Found EV RNA in patients after biopsy of parietal cells in 2006/07..

    How do we connect the stomach infections to the brain?

    It is likely that the virus travels to the brain via the vagus nerve.

    Dr Claire Hutchinson

    Dr Claire Hutchinson will now speak about Biomarkers for ME: Visual Processing and ME/CFS.

    ME patients consistently report visual symptoms.

    Symptoms include hypersensitivity to light, tracking problems, reading difficulties.

    Objectives of research — demonstrate that ME causes a range of visual problems and identify key visual symptoms as clinical features of ME.

    Examined responses from patients and collated symptoms — commonly reported — difficulty focusing, hypersensitivity to light,

    itchy dry eyes, eye pain, loss of depth perception. The more frequent the symptoms, the greater the severity

    Some visual symptoms are included in diagnostic measures of ME.

    Visual hypersensitivity can represent Cortical Hyperexcitability

    This is found in epilepsy, stroke patients, in MS patients. It can be measured via visual stress/pattern glare —

    The study with 20 patients/17 controls will be completed in about 3 weeks.

    Patients consistently report distortions.

    Also looked at visual attention and ignoring irrelevant background information.

    Found that patients are slower at finding targets than controls. With increased distraction, patients were more rapidly negatively affected.

    This is the first experimental evidence to back up patient reports.

    Visual attention – 29 patients/29 controls — looked at processing speed, divided attention and selective attention.

    Patients needed the visual information to appear longer than the controls for a response to occur.

    Visual processing speed did not appear to be different between groups.

    Ongoing projects — Reading behaviour, Vision-related quality of life, and Opthamalic corrleates of ME

    15 minute break followed by Professor Betsy Keller on Molecular markers before/after exercise /Activity guidelines to avoid symptom flares

  • mango May 29, 2015, 12:27 pm

    Tweets by Kina/Phoenix Rising https://twitter.com/aboutmecfs

    Prof Betsy Keller

    There are activity guidelines that should be paid attention to.

    Will talk about energy currency — short-term anaerobic (immediate stores available on demand), long term anaerobic and aerobic.

    Our aerobic energy system has gone awry in ME/CFS.

    PEM is a defining quality of ME. ME is not JUST fatigue.

    Bateman — pre-emptive rest on a schedule, pace yourself.

    As a patient you need to redefine and focus on what works for you.

    Goal — improve range of motion, improve functional strength, and improve core stability.

    Core stability is musculature that supports your spine.

    With poor core stability — you overuse your extremities.

    Spinal alignment is key for good function and energy conservation.

    Going through how to align the spine properly. Warm-up always begins with nose-breathing (thru the nose, 4 sec in, 6-8 sec out)

    Relaxing, relieves pain. Has to become a havit.

    There are 5 simple steps to align the spine. 1. Contract pelvic floor. eg for women — eg kegel exercises

    2. Draw-in or Brace ('suck belly-button into spine.) to stabilize pelvis 3, Raise ribcage – pretend ribcage is an umbrella

    4. Back extension — lie on floor in flying Superman pose – slide shoulder blades together or shoulders back and down. 5. Retract chin is the last step to aligning spine.

    Giving examples of gentle exercises to strengthen to core — eg physio ball, start with a chair first, yoga etc.

    Physical activity progression — start with stretching and core stability. Stage 2 = stretching with resistance activity

    Stage 3 = Dose controlled Interval Activity Stage 4 = Maintenance Goal = improved function. These stages can take as much time as needed.

    When structured physical activity does work, you can increase activity eg 10 seconds with 30 seconds rest —

    Activity biofeedback is good — monitor heartrate with a HR monitor. With ME, exceeding a certain HR will cause issues.

    Can use a 'Perceive Exertion scale' to monitor responses/tolerance to activity.

    Energy conservation is a MUST.

    Discussing energy saving tips — eg shower chair, pack groceries in a smart way, cook ahead, monitor calls, disabled parking placard,

    learn to say no to 'energy zappers'.

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

  • mango May 29, 2015, 12:28 pm

    Tweets by Kina/Phoenix Rising https://twitter.com/aboutmecfs

    Dr Oystein Fluge & Prof Olav Mella

    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 sudy.

    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.

  • mango May 29, 2015, 12:31 pm

    …and here is a link to a downloadable document with all the above tweets (.doc, 59kB)
    http://www34.zippyshare.com/v/EazQc7HH/file.html

    big warm thanks to @Kina, once again! <3 :)

  • Sasha May 29, 2015, 12:32 pm
    Kina

    It wasn't Mark tweeting. It was me. It's a real eye opener and very exciting for me to be able to attend IiME. You can do whatever you want with my tweets except call me an idiot because I got things wrong or misinterpreted something. It's all very hard on me, I am exhausted. Time to crash. Mark was taking extensive notes for his article.

    It was you? But you're in Canada!

  • Scarecrow May 29, 2015, 12:36 pm
    Kina

    It wasn't Mark tweeting. It was me. It's a real eye opener and very exciting for me to be able to attend IiME. You can do whatever you want with my tweets except call me an idiot because I got things wrong or misinterpreted something. It's all very hard on me, I am exhausted. Time to crash. Mark was taking extensive notes for his article.

    Thanks, Kina. You did a great job. :bouquet:

  • halcyon May 29, 2015, 12:47 pm
    mango

    Evidence of EV RNA in tissues of ME patient — tissue removed from deceased ME patient who had committed suicide.

    Thank you for being our eyes and ears on the ground, @Kina. Did Dr. Chia go into detail on the pathology findings in this deceased patient, e.g. was virus found in the patient's brain?

  • Kina May 29, 2015, 12:52 pm
    halcyon

    Thank you for being our eyes and ears on the ground, @Kina. Did Dr. Chia go into detail on the pathology findings in this deceased patient, e.g. was virus found in the patient's brain?

    No, not too many details on the pathology findings.

  • Bob May 29, 2015, 2:36 pm

    Thank you so much for all your Tweets today @Kina! :thumbsup: You're a star! :star:
    So glad you could make it to the conference, and enjoyed it so much.
    Everyone seems to really enjoy the IiME conferences, and come away glowing, saying how lovely everyone is (patients and researchers). I always hear super-positive feedback from people who've attended.
    Did you manage to chat to lots of nice people?
    Rest well tonight.
    Thanks again.

  • Bob May 29, 2015, 2:40 pm

    @Kina, I've just got a very brief question, if you're still awake and permitted to answer…

    "NIH — planning a new microbiome/immune profiling study."

    Do you know if this means that the NIH have funded a new ME-specific study to be carried out by Dr Hornig's team?

  • Jonathan Edwards May 29, 2015, 2:53 pm

    Everyone was very pleased with the three days of meetings this year. The Friday tends to be a repeat of material the researchers have discussed on the previous days and I hope it was a good mix for patients and carers in the audience. I thought Olav Mella's final review of the Norwegian rituximab story was particularly impressive. This is science as good as it gets, very creative but an insistence on top quality methodology.

    The atmosphere in the workshop was really outstanding because there is now a group of researchers who know each other well enough to openly exchange and develop collaborative ideas. There were some exciting new features, some of which we will be able to discuss here, and some of which will need to be under wraps for a bit, but again I think the most important think was the focus on quality methodology. Having two days of workshop gave us space and an extra evening for people to brainstorm together. We had a really encouraging brain imaging session and more new scientists are being drawn in from other disciplines.

  • Sasha May 29, 2015, 2:58 pm

    @Kina, thanks so much for doing all that tweeting! I really don't know how you managed it. I hope you get a good rest now!

    @Jonathan Edwards – that sounds hugely encouraging! Looking forward to hearing whatever you can tell us…

  • voner May 29, 2015, 3:04 pm
    Jonathan Edwards

    ……. We had a really encouraging brain imaging session and more new scientists are being drawn in from other disciplines.

    Brain imaging? do you think the brain imaging features you saw are tied to symptoms or causative factors?

  • Kina May 29, 2015, 3:31 pm
    Bob

    @Kina, I've just got a very brief question, if you're still awake and permitted to answer…

    "NIH — planning a new microbiome/immune profiling study."

    Do you know if this means that the NIH have funded a new ME-specific study to be carried out by Dr Hornig's team?

    Mady Hornig was going through who was funding their research and she said the NIH was funding this — that is what I took from it. They are getting alot of funding from different sources which can only be positive for us.

  • Kina May 29, 2015, 3:37 pm
    Sasha

    @Kina, thanks so much for doing all that tweeting! I really don't know how you managed it. I hope you get a good rest now!

    @Jonathan Edwards – that sounds hugely encouraging! Looking forward to hearing whatever you can tell us…

    Thanks Sasha. I kept getting lost in all the stuff they were talking about. It really does make you cognizant of what you have lost. My brain goes about at about 10 percent of what I uaed to be able to process — makes me sad. It was a struggle and I am exhausted. Hopefully, i got the main points across.

  • Bob May 29, 2015, 3:39 pm

    Thank you Kina.

  • Sasha May 29, 2015, 3:43 pm
    Kina

    Thanks Sasha. I kept getting lost in all the stuff they were talking about. It really does make you cognizant of what you have lost. My brain goes about at about 10 percent of what I uaed to be able to process — makes me sad. It was a struggle and I am exhausted. Hopefully, i got the main points across.

    I thought you did great – you were going great guns there!

  • Bob May 29, 2015, 3:51 pm

    My goodness, I've just gone stratospheric and reached 10,000 posts! :rocket: :star:

    How the heck I have managed to write such a ridiculously enormous number of posts, and what on earth I can possibly have babbled on about in so many posts, I've no idea! I hope I haven't bored you all senseless over the years! (The funny thing is that I can only remember about 10 posts! I've forgotten the contents of the other 9,990 — I read my old posts sometimes and it baffles me that I actually wrote what I'm reading!)

    Anyway, sorry, completely off-topic, and all about me, but I felt I had to say something about it, and have a moment's commemoration of my achievement. :cocktail:

    It wouldn't have been possible without you all. I'd like to thank every single one of you. Thank you. :)

    As you were.

  • Mark May 29, 2015, 3:58 pm
    Bob

    My goodness, I've just gone stratospheric and reached 10,000 posts! :rocket: :star:

    How the heck I have managed to write such a ridiculously enormous number of posts, and what on earth I can possibly have babbled on about in so many posts, I've no idea! I hope I haven't bored you all senseless over the years! (The funny thing is that I can only remember about 10 posts! I've forgotten the contents of the other 9,990 — I read my old posts sometimes and it baffles me that I actually wrote what I'm reading!)

    Anyway, sorry, completely off-topic, and all about me, but I felt I had to say something about it, and have a moment's commemoration of my achievement. :cocktail:

    It wouldn't have been possible without you all. I'd like to thank every single one of you. Thank you. :)

    As you were.

    Congratulations Bob, an my apologies that we aren't yet set up to recognise such milestones; I think a new category of 'hero member' might be appropriate…:D

    :thumbsup: x 10k

  • Mark May 29, 2015, 3:58 pm

    Ahead of my article (which I think will take a few days to prepare, at least), here are some sound-bites, a few key bits of (unembargoed) news, and some take-home points…

    Dr. Ian Gibson:
    “This is an exciting event every year, but it gets better and better… The commitment and enthusiasm of the people who present…is second to none…We’re on an up, and I think this conference is going to demonstrate that.”

    He’s writing a book about the politics of ME, and what delays things in research.

    Professor Mady Hornig:
    “2015 seems to be the year, in which we’re seeing so much coming together, and so much synergy, across the globe really”

    They’re planning a new follow-up microbiome study in association with the Chronic Fatigue Initiative (CFI).

    Specifically, noted eotaxin: 33 times the level of controls in the patients they studied.

    The embargoed content was the results of the metabolomics study, as Simon guessed. They’re still going through and analysing the results and trying to figure out what it all means. The one snippet she did let go looks to me like another important piece of the puzzle…but I’m not going to break the embargo on that…

    Professor Jonas Bergquist:
    The embargoed info in this presentation concerns a fairly small study which hasn’t been published yet, but again looks to me like a significant piece of the puzzle.

    Dr. Amolak Bansal:
    Reviewing case definitions, he commented on SEID that the name is “not very catchy”. The criteria are simple, but perhaps too simple, and there’s not enough guidance for it to be useful for research purposes. He explained the Sutton CFS/ME Scoring System they created for use at his clinic, and why they use it to help distinguish “CFS” from “ME”. In his review of case definitions, he highlighted some symptoms that they feel are quite consistent in ME/CFS patients but not really recognised in the case definitions: hypersensitivity to medications, alcohol intolerance, cold peripheries (hands and feet), and most interesting of all, altered pupil reflexes, which he described in some detail – an observation which has never been written up scientifically, he said, but which they see quite consistently.

    Dr. Luis Nacul:
    Reviewed the epidemiological evidence on ME/CFS, why the epidemiology is crucial to getting things right, and how bad epidemiology has hampered progress to date. “The pieces of this jigsaw are really coming together…I think we’re getting there…but…we’re not quite there yet”. Described people with ME and their carers as “the real experts”.

    Professor Sonya Marshall-Gradisnik + Dr Don Staines:
    Presented the results from their recent papers on SNPs in ME/CFS patients. Discussed some of the potential implications of the SNPs they found, and explained why those SNPs look like they fit well with known ME/CFS symptomology. In answer to my question, Marshall-Gradisnik claimed that they had applied statistical corrections to allow for the large number of SNPs they had evaluated, and had employed ‘Australia’s best biostatistician’ to do so.

    Dr. Jo Cambridge:
    A highly-accessible quick explanation of the B cell lifecycle, followed by a rapid explanation of the latest in their efforts to investigate the subtle ways in which B cells may be functioning differently in ME/CFS patients – and between ME/CFS patients. Unfortunately, the latter was much too rapid for me to get good notes on those all-important details, but it does appear that they have now identified the distinction they need in order to add significant value to the UK Rituximab study.

    Although the percentage of B cells in the blood was the same in ME/CFS patients as controls, and they found no differences in classical B cell subsets, they found differences in maturation markers CD24 in CD19, and CD38 in CD21. Presenting a slide of their results, which showed these markers in patients vs controls, Cambridge assured the audience that although the difference between the plots may look small to the untrained eye, it’s actually very significant.

    To my understanding their findings are indicating significant differences (in ME/CFS patients) in the proportions of certain types of B cells that are at different stages of maturation. In CD19, at least, there’s a higher proportion of ‘younger’ cells in the ME/CFS patients. The plan now, as I understand it, will be to monitor how those particular markers vary during the course of Rituximab treatment – one might perhaps hope that this abnormal metric might disappear after Rituximab treatment, for some patients at least – and whatever happens, it should provide important clues. Jonathan Edwards can no doubt correct my naïve understanding of all this in due course…

    Dr. Neil Harrison:
    So far, his work has been mostly concerned with exploring the relationship between inflammation and human behaviour, and how the immune system interacts with the brain. But he now has a little bit of money available to explore this in ME specifically. For now, his presentation focused on a (most interesting) generic description of this field of research…so no ME-specific news here yet.

    Dr. John Chia:
    Glad to be back at IiME after a 3-year absence. Reviewed his work on enteroviruses – some distance above my head, unfortunately, but I noticed that a few top researchers present were keen to talk with him about his work.

    Dr. Claire Hutchinson:
    Well off the beaten track, but for me this was in some ways the most fascinating and thought-provoking presentation of the conference. Hutchinson noted that visual symptoms are frequently discussed by patients on forums but there’s practically no literature on the subject. Heightened sensitivity to light, difficulty filtering out extraneous information, problems with eye movement and tracking, difficulties with reading, etc. Such things have been measured successfully in Alzheimer’s, MS, and Parkinson’s….and now Hutchinson has confirmed experimentally these anecdotal observations of patients.

    The results she presented indicate some considerable success in relation to her goals to demonstrate that ME causes a range of vision-related problems” and to “identify key visual symptoms as clinical features of ME”. Peripheral though these symptoms may be to the symptomology of ME/CFS, I was left with the feeling that these clear, objective, easily measurable findings are potentially very useful indeed, politically, and might also offer a clear signpost towards key neurological insights.

    Professor Betsy Keller:
    Her interactive presentation offered patients some “Activity guidelines to avoid symptom flares”. She got the audience on its feet (never easy at an ME/CFS conference!) to walk through some low-impact postural exercises to help with energy management. A practical and informative session.

    Dr. Oystein Fluge, Professor Olav Mella:
    As usual, a significant proportion of the audience had left the building (doubtless of necessity) by the time the headline act hit the stage. They talked us through the history of the Rituximab findings, how it came about, and the state of play with the Rituximab study.

    Quite a bit of new unembargoed info in this presentation, I think. The study will be unblinded in summer of 2017 (assuming all proceeds according to plan in the next few months). The long delayed Phase II follow-up study on Rituximab should hopefully be published in PloS One in 2-3 weeks – it required 3 years observation time (post-treatment) before publication, that’s why it’s been so much delayed.

    Most exciting to me (because I’ve bought into their hypothesis that it’s an antibody to the epithelium that we’re looking for, ultimately) they can already say with confidence that their sub-study on endothelial dysfunction is confirming the findings from the Dundee researchers: they, too, are finding measurable endothelial dysfunction in their patients. It also looks to them like the degree of endothelial dysfunction correlates with the degree of disability – which potentially makes it an important finding, and (I’m speculating here) they might be able to publish on this subject before the main trial completes.

    The rigour of their methodology for the Rituximab trial impressed everyone present. They’ve started their approved Phase II study on the much cheaper Cyclophosphamide, with 40 patients diagnosed by CCC with illness duration >2 years. If the response is good and toxicity data is OK, they plan a second phase of this study for 20 severe and very severe patients.

    Professor Mella said they’ve been to IiME for 5 years and this conference was “the best so far” – they were especially impressed by the research colloquium. Most ideas come from patients, he said: “It’s a good thing for doctors to listen to patients, because what they tell us is the truth…what they tell us is in fact what is happening to them, so it’s up to us to find a cause…”

    Finally, Dr Gibson closed by saying he ‘takes his hat off to all the scientists we’ve heard from’ and spoke of his admiration for them: they “stuck to it when the easiest thing was to walk away”, and when people say “we’ll never find the cause”, their response was “the hell with it, we are”.

    I’ll echo that from my personal perspective: every year I’ve been to IiME the science has been more exciting than the last, more coherent and more joined-up than the last. The talk of ‘pieces of a jigsaw puzzle’ makes more and more sense with each piece that falls into place. It’s a slow and painstaking process, we can still expect things to move in timescales measured in years rather than months – but we can confidently expect the science to keep moving forward.

  • mango May 29, 2015, 3:59 pm
    Bob

    My goodness, I've just gone stratospheric and reached 10,000 posts! :rocket: :star:

    big congrats, bob! :balloons: thank you! you really are a super valuable part of PR, and deeply appreciated :hug:

  • Sasha May 29, 2015, 4:04 pm
    Bob

    My goodness, I've just gone stratospheric and reached 10,000 posts! :rocket: :star:

    How the heck I have managed to write such a ridiculously enormous number of posts, and what on earth I can possibly have babbled on about in so many posts, I've no idea! I hope I haven't bored you all senseless over the years! (The funny thing is that I can only remember about 10 posts! I've forgotten the contents of the other 9,990 — I read my old posts sometimes and it baffles me that I actually wrote what I'm reading!)

    Anyway, sorry, completely off-topic, and all about me, but I felt I had to say something about it, and have a moment's commemoration of my achievement. :cocktail:

    It wouldn't have been possible without you all. I'd like to thank every single one of you. Thank you. :)

    As you were.

    Welcome, Bob, to the sad side of 10,000! :cake::trophy::bouquet::cocktail:

  • Bob May 29, 2015, 4:12 pm
    Mark

    Dr. Amolak Bansal:

    Reviewing case definitions, he commented on SEID that the name is “not very catchy”. The criteria are simple, but perhaps too simple, and there’s not enough guidance for it to be useful for research purposes. He explained the Sutton CFS/ME Scoring System they created for use at his clinic, and why they use it to help distinguish “CFS” from “ME”. In his review of case definitions, he highlighted some symptoms that they feel are quite consistent in ME/CFS patients but not really recognised in the case definitions: hypersensitivity to medications, alcohol intolerance, cold peripheries (hands and feet), and most interesting of all, altered pupil reflexes, which he described in some detail – an observation which has never been written up scientifically, he said, but which they see quite consistently.

    This is all very unusual, and very refreshing, to see in a UK NHS practice. Including separating CFS from ME, diagnostically. I've absolutely never seen that being done in the UK before! Perhaps there's hope for us in the UK yet! I'm liking Dr Bansal, more and more, the more I read about him.

  • Sushi May 29, 2015, 4:13 pm

    It's just the two of you….[​IMG]

    Bob

    I hope I haven't bored you all senseless over the years!

    Not at all, and the posts from both of you are on most members' favorite menu. :thumbsup:

    Sushi

  • Bob May 29, 2015, 4:14 pm
    Sasha

    Welcome, Bob, to the sad side of 10,000! :cake::trophy::bouquet::cocktail:

    Sad, as in we have no other life? Oh well, we can commiserate happily with each other here! :)

  • daisybell May 29, 2015, 4:16 pm

    Would just like to add that Prof Mella was so impressive. Such attention to correct procedure and to making sure that whatever they find from their research, the methodology will stand up to all scrutiny. I felt that I can have complete confidence in them, and was hugely excited by this talk….

  • Bob May 29, 2015, 4:18 pm
    Mark

    Professor Mady Hornig:

    “2015 seems to be the year, in which we’re seeing so much coming together, and so much synergy, across the globe really”

    They’re planning a new follow-up microbiome study in association with the Chronic Fatigue Initiative (CFI).

    Specifically, noted eotaxin: 33 times the level of controls in the patients they studied.

    The embargoed content was the results of the metabolomics study, as Simon guessed. They’re still going through and analysing the results and trying to figure out what it all means. The one snippet she did let go looks to me like another important piece of the puzzle…but I’m not going to break the embargo on that…

    I'm finding this all very exciting. Do we know much about eotaxin? Have we discussed it before anywhere? (I can't remember.)