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

Sasha submitted a new blog post:

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.

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The 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​

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!

Support Phoenix Rising​

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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Continue reading the Original Blog Post

 

I am disappointed at all these results, people. We clearly didn't manage to scare away enough good researchers.

 

David Brooks gave us a basic seminar in new imaging and particularly PET labelling techniques. He was very clear and informative and took us through what has now been found in a wide range of illnesses where there are symptoms but nothing to see on standard brain scans. That includes a lot of conditions like Parkinson's disease, Alzheimer's and Huntingdon's years before anything shows up on standard scans or other tests. Imaging microglial activation even shows up the normal increase in tidying up activity in the brain stem that occurs in everyone as we get older.
[...]
So the bottom line is that the experts on neuroimaging think that we may have ways to image the structural basis of the sort of subtle brain changes that are likely to be present in ME. And they are taking the Japanese findings seriously.

What I like about the PET studies, to get to voner's question, is that they show microstructural changes which cannot be explained just on the basis that the person in the scanner is 'thinking something different at the time'. One of the problems with fMRI is that the signal will change just with doing mental arithmetic. That can be useful at times but it raises issues about subjectivity of findings. The PET scans show subtle changes in the structure of the brain - which I think we could reasonably say are going to be part of the causal process, although that may be complicated.

...

In a recent interview, Jarred Younger talked about carrying out PET scans on ME/CFS and Fibro patients.
His methodology: Injecting the patient with translocator proteins that are attracted to activated microglia; the PET scan highlights the activated microglia, and thus shows the 'inflammation' in the brain.
He intends to do this and then treat the patients with LDN, and then rescan the patients to see if the inflammation (activated microglia) decreases after the treatment.
He thinks that activated microglia may be involved in both ME and Fibro, and the different symptoms may be a result of microglia pumping out different chemical signals.

Jarred Younger, of UAB, explains Microglia and Leptin research.
(Listen at 10.28 for his short discussion re PET scans.)
http://yourlisten.com/TinaTidmore/jarred-younger-of-uab-explains-microglia-leptin-research#play

 

Last year's IiME and Stanford conferences made me feel for the first time in my life that we have an actual chance of figuring out what's going on in this disease. This year's conference makes me feel even more weirdly optimistic that we're slowly crawling out of the bizarre 30-year stalemate the field had boxed itself into with various psychogenic and herpes virus hypotheses. The endothelial dysfunction stuff is key and I am so glad to see stellar researchers like Fluge/Mella looking into this. I feel like the seemingly disparate pieces of the puzzle are starting to fit and an overall picture is starting to take shape in a way it never had in the past. Even if no good treatments come out of this I think there is a genuine chance we'll have diagnostic tests at least proving an organic disease process that doesn't cause damage (unlike CPET) and can not be dismissed with a hand wave by the psychobabblist school. That would give us legitimacy at least and reduce some of the psychosocial stress we have to endure.

 

The single most encouraging aspect of the workshop for me was confirmation of the potential of new brain imaging techniques. Angela Vincent had invited David Brooks from the basic imaging research unit at Imperial College (he has moved to Denmark recently). I had also asked for Neil Harrison from Sussex to come - he does MRI and is interested in things like microglial activation on a wide front although he seems to be getting more interested in ME.

Now that you're all gen'd up on brain imaging techniques I wonder what you make of this potential alternative mode of action of Ritux?

http://forums.phoenixrising.me/inde...which-rtx-might-be-working.37669/#post-599905

(Best to respond on the other thread!).

 

To be fair, I don't think that the patients are railing against the yoga and Tai Chi. It's against all the stories in the Daily Mail featuring photogenic women who have recovered from M.E., having been ill for a year or so, and who attribute their recovery to yoga.

And the fact that while mild patients may be able to do yoga or Tai Chi, many moderate to severe patients have tried it and had PEM from it. Also, patients with ill-controlled OI probably can't do standing or even upright sitting exercise like yoga and Tai Chi.

Both the experts and patients need to remember that the patients the ME/CFS exercise experts see are mostly mild patients, so their casual exercise recommendations probably apply to those patients, not all patients.

The experts would probably be much more cautious with individual recommendations to more affected patients. I know Connie Sol hasn't recommended either for me so far -- just supine strength exercise for 5 mins at a time, no more than 20 slow reps of any one exercise and simple stretching.

 

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...

x 10k

I suggest "Stratosphero" for the 10,000 posts milestone

 

I totally agree with @Sasha that "Just saying 'do some yoga' is not help at all", what does it even mean?

What we nowadays call 'yoga' here in the West is most often more like "regular exercise" at the gym, and has very little to do with traditional yoga. Genuine yoga is therapeutic, holistic and scientific by nature, individually tailored and very complex. And yes, it comes in infinite varieties... Also, the physical exercises (called asana) is just one teeny tiny part of yoga as a whole.

I had been doing yoga for many years -- both vigorous and gymnastic/acrobatic kinds of yoga as well as therapeutic and restorative/meditative ones -- when i fell ill (in 2004), but as the ME kept getting worse I've sadly had to give up more and more of my yoga practice over the years...

Even the gentle custom designed therapeutic/restorative yoga programs that I was taught on a one-to-one basis during a 5 week stay at a very good hospital in India kept causing me PEM. Those programs were tailor-made for me personally and my particular symptoms, current physical condition etc, adjusted from day to day. I still hadn't gone from moderate to severe ME at the time. (Those doctors were fantastic and really tried their very best to figure something out. They had gone through more than 5 years of ayurvedic and yoga training at university, on top of their regular medical education, so it wasn't for a lack of skill...)

It didn't help to only do the most gentle of exercises, it simply was too much for my body. Same thing happened with my tai chi and qigong practices (and belly dance)... What once was doing my body-mind lots and lots of good, was now sadly damaging it

(I did a lot of extensive yoga teacher trainings over the years and I actually used to teach therapeutic yoga and meditation/mindfulness for ill and disabled people for a few years, so this is a question very close to my heart.)

Yoga can be very powerful. For example a couple of minutes of simple stretching might not look like much at all, but in fact it has the potential to deeply affect not only the muscles but (for example) the inner organs, blood flow, fascia and the nervous system as well as the subtle energy system in quite a strong/intense way...

...and for this reason I wholly agree with what Bob said. Speaking from my own experience (of being bed/couch bound), this is very true:

I don't think yoga etc, would necessarily be wise for bed bound folk. Could cause a major flare. [...] I'm thinking more along the lines of small amounts of energy expenditure or stimulation causing flares.

It is true that yoga have the potential to be hugely useful tools for some PWME, even for some of us who are (very) severely affected. However, it's IMMENSELY IMPORTANT to find a very very skilled, respectful, compassionate, gentle and experienced teacher who can customize and fine-tune it exactly to our ever-changing needs...

...honestly though, I don't think it's realistic to expect that there will be teachers like that available to many of us, if to anyone at all.

(Sorry for the long post! I tried to write as concisely as possible... but it's just too difficult, I'm so passionate about this, feel so strongly about this subject! )

 

dysfunction in axonal guidance.

Just in case this slips under the radar, if there is an issue with axonal guidance there are likely to be issues with nerve and brain repair, development of new responses, and brain growth - this last is important in children.

Maybe a neuroscience boffin could comment further?

 

Wow, @Kina - You did a fabulous job! I bet it was very hard on you.

Hope your feet are up, your comforts are near, and your PEM is non-existent.

Here’s a cup of something warm, on me! Big thanks!

 

Fantastic job, Kina. Thank you!

 

Yes, @ Kina Thank you so much for the tweets.

I was there, but would not be able to type fast enough to tweet. Am hoping my garbled notes will make some sense, in due course.

Re Betsy Keller and the stretching etc....

Her pictures and exercises reminded me more of Pilates, than yoga, in my limited experience.
I do not have ME (my daughter does - moderate), However, I have a severe spinal abnormality so am used to pain, lack of sleep and restricted movement...
I used to enjoy yoga, but it gradually became too 'twisty'.
I have found a Pilates class where we do most exercises lying down and I feel that my daughter could do some of the stretches, for a few minutes at a time.

Something that Betsy Keller was stressing is that people with ME should stretch for say 20 secs, then REST for 80 secs or however long you need. My understanding is that if you can only do one short stretch a day, then go with that.
I do appreciate that this may be more than some of the severely ill can do.

 

But the importance of identifying what ME/CFS patients can do without inducing PEM is huge, if you think about it, and her practical strategies for establishing and maintaining Core Stability

This is something I have worked with a lot on a personal level. I used to teach yoga but found that the standing, arms-over-the-head and the aerobic nature of some of the poses was no longer possible for me. So I tried pilates with machines, focusing on core strength and done mostly lying down. I have been doing this for about 6 years and, while it doesn't help "ME/CFS" it does keep muscles in decent shape and helps hugely with the aches and pains of EDS.

A YouTube 'exercise video' on this would be a fantastic resource. It's going to be tricky for me to describe it all adequately in words...

A YouTube would be excellent. Is their some way that Phoenix Rising could promote that idea to Betsy Keller?

I find any general advice to do yoga or similar things deeply, deeply unhelpful because there's a shedload of yoga moves. Just saying 'do some yoga' is not help at all, especially for patients who have OI issues (most of us) - there's a lot of 'arms above heart' stuff that will do us in.

Exactly, that is why, for me, pilates lying down is a whole different experience.

Also, patients with ill-controlled OI probably can't do standing or even upright sitting exercise like yoga and Tai Chi.

Her pictures and exercises reminded me more of Pilates, than yoga, in my limited experience.

I have found a Pilates class where we do most exercises lying down and I feel that my daughter could do some of the stretches, for a few minutes at a time.

Pacing is my challenge even though we are lying down. I use an HR monitor and the instructor is fine with me doing just what I can.

Having said all that, I am a moderate patient not severe. Yet some of the core exercises could, I think, be modified for severe patients, given plenty of rest and recovery between each "rep." I know that some are too severe for any type of exercise, even stretching, but for others there could be advantages to pilates done with machines (which use weight (springs actually) to assist you. The downside is that the machines are very expensive so the classes can be a bit pricey.

Sushi

 

pilates lying down is a whole different experience.

The only "exercise" I ever found useful was passive movement, while lying down and with another person taking all the weight and moving my limbs and joints for me. It did help slow the decline, but is almost impossible to find someone who understands how to do this, especially in the context of ME.

Would be interested to see Dr Keller's stuff, if she deals with this very basic sort of movement.

 

Dr Keller was suggesting that any exercise/activity must not be aerobic, as this form of energy production is broken in us. So the strengthening and stretching exercises should be done in very short bursts, with at least twice the amount of rest following each bit of activity. She also suggested that if necessary, these should all be done lying down. At no point should anyone with ME get too out of breath to be able to talk easily.... And basically our activity should be mostly one level up from doing nothing!

 

And the fact that while mild patients may be able to do yoga or Tai Chi, many moderate to severe patients have tried it and had PEM from it. Also, patients with ill-controlled OI probably can't do standing or even upright sitting exercise like yoga and Tai Chi.

Both the experts and patients need to remember that the patients the ME/CFS exercise experts see are mostly mild patients, so their casual exercise recommendations probably apply to those patients, not all patients.

First of all, my Daily Mail comment in response to Mark was a bit flippant. I didn't mean to offend and I apologise.

I have to disagree about Betsy Keller only mostly seeing mild patients, though. As a mild patient, I can't think what I would gain from consulting an exercise physiologist. Mild patients should be active enough not to need to. Betsy Keller sees a lot of patients who need help with disability claims - see Cort's blog. Those are not mild patients (nor severe, obviously).

About four months ago, within the space of only a few days, I went from being able to walk at a reasonable pace for a couple of miles, without any ill effects, to having to do the washing up in several stages. A short walk completely incapacitated me for hours. Fortunately, I'm getting back to my pre crash level but in the relatively short period of time that my activity has been restricted, I can see that a degree of deconditioning is starting to kick in. Note that I am clearly saying that the deconditioning is a result of the crash and not the other way round. If I'd had the foresight, I probably would have done some stretching and light strengthening exercises to maintain a little bit of flexibility and keep the lymph moving. As it is, it's no big deal because it's only been a matter of months.

We are not designed to be inactive. There are consequences of inactivity for everyone just as there are consequences of too much activity for PWME. Mild patients should only have to concern themselves not to exceed their limits but as severity increases it becomes ever more impossible to balance the equation. Perhaps that is where exercise physiologists can help.

We've focussed too much on the Tai Chi / yoga element in Betsy Keller's presentation. My fault, everyone. Sorry!

It's worth quoting again what Kina tweeted. I think it's clear that (1) Keller 'gets' ME (2) her advice is tailored to the individual and that (3) she is aiming squarely at moderate patients at the lower end and severe patients at the upper end, depending on interpretation of moderate and severe.

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'.

 

I would love to see what Prof. Betsy Keller had to say for my self. If I purchase the DVD will her complete talk be on there?

I would love to see her put all of her recommendations for movement in a video that people could follow at home. Then each one of us could experiment for ourselves to see what we can tolerate and what we can't but it would at least be a starting point.

 

I found a YouTube (sorry about the commercial at the beginning) that shows a way to exercise the legs lying down on the pilates reformer machine. The teacher in the video has attached all the springs to make it as hard as possible. There are 5 springs of varying tensions and you can attach just one light one if you wish. This video just gives a visual to my post above.

 

No idea, but it would be good if somebody would. Along with the visual processing findings, I'd love to see this documented in a decent sized cohort. Maybe the thing to do would be to investigate the correlation of these signals with other objective signs and with various diagnostic criteria, to try to get a handle on subgrouping, but I'm not quite sure how that might work...

This is the kind of thing that has the potential to be rapidly moved to clinical practice. Sadly I first heard of this kind of thing in 1993. Its taken 22 years, but finally a formal study.

 

I am disappointed at all these results, people. We clearly didn't manage to scare away enough good researchers.

We have to work harder or we wont get that Babble Gold Star!

 

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.

Please know that your energy expenditure is much appreciated!
I am very glad you were able to attend!

I look forward to Mark's article.