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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 }

  • Mark May 30, 2015, 12:18 am
    Bob

    This is very refreshing, and unusual, 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!

    He may not be happy with that paraphrasing of what he said! But he did say that 'ME has been seen as being characterised by more consistent and more severe PEM, and more severe cognitive impairment' (not an exact quote, but close). And the Sutton Scale is designed to identify this distinction. I know that he does offer CBT at his practice, and he always seems to talk about stress and perpetuating factors, so his approach is rather a mixed one, but I don't think that's necessarily a bad thing. He says a lot of great things and a few things that would raise a few eyebrows, but I'm confident that he totally "gets it". :)

  • Bob May 30, 2015, 12:23 am
    Mark

    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.

    :thumbsup: Interesting. And potentially very helpful.

  • Sushi May 30, 2015, 12:24 am
    Mark

    Heightened sensitivity to light, difficulty filtering out extraneous information, problems with eye movement and tracking, difficulties with reading, etc.

    This fits so well with the problems many of us experience with driving. For me, it requires complete concentration, dark glasses, and a baseball cap tipped to block out sources of glare. Night driving is worse as I find it harder to track movement quickly. And reading signs???

    Sushi

  • Scarecrow May 30, 2015, 12:24 am
    Bob

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

    Some in the thread discussing the CSF study, starting here:
    http://forums.phoenixrising.me/inde…in-and-hornig-is-out.36607/page-2#post-580527

    [Edited because I linked to the wrong post first time]

  • Mark May 30, 2015, 12:25 am
    daisybell

    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….

    Indeed, that was super-impressive.

    The question I was preparing in my mind was: "You've explained how this study is randomised, placebo-controlled, double-blinded, and externally monitored, and you've gone through a hugely impressive explanation of the details of how it will be conducted. So my question to you is: How the hell are our friends in the CBT/GET industry going to get out of this?".

    But we ran out of time…:(

    And I'm so sorry we didn't manage to meet up; I ran out of time to message you (so busy, in the run-up to the conference)…maybe next year…:)

  • Bob May 30, 2015, 12:25 am
    Mark

    …so his approach is rather a mixed one, but I don't think that's necessarily a bad thing. He says a lot of great things and a few things that would raise a few eyebrows, but I'm confident that he totally "gets it". :)

    Yes, that's been my impression about him as well. A bit mixed, but overall going in a very good direction, I think.

  • Mark May 30, 2015, 12:26 am
    Bob

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

    Dunno, but Jonathan mentioned it as something that seems to be coming up fairly consistently.

  • voner May 30, 2015, 12:26 am
    Mark

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

    anyone want to to educate us by telling us about eotaxins and the significance of them in disease/health?

  • Mark May 30, 2015, 12:30 am
    Sushi

    This fits so well with the problems many of us experience with driving. For me, it requires complete concentration, dark glasses, and a baseball cap tipped to block out sources of glare. Night driving is worse as I find it harder to track movement quickly. And reading signs???

    Sushi

    When she presented on that, I just thought wow, of course we talk about these things all the time, and so many of us go around in dark glasses all the time, it's such a big thing, yet nobody ever though to research our visual processing? And we haven't exactly been clamoring for that either – I think she's stumbled on a field that is just ripe for further research.

    And these tests, some of them are so easy to present…if only I had the time, I'd love to write an app for that…

  • Bob May 30, 2015, 12:32 am

    Thanku so much @Mark, for all your notes. All very interesting and hopeful. Hope you had a great day.

  • Mark May 30, 2015, 12:38 am
    voner

    anyone want to to educate us by telling us about eotaxins and the significance of them in disease/health?

    Well, there's this…
    http://en.wikipedia.org/wiki/Eotaxin

    One of the 3 is associated with cannabis use and schizophrenia, one with aspirin-associated respiratory disease, and one is expressed in endothelial cells. Plenty to chew on there. Let's hope it's specifically the 3rd type that's elevated, and it's another clue pointing at the endothelium, rather than a reflection of what many of us find effective as a painkiller…

  • Mark May 30, 2015, 12:39 am
    Bob

    Thanku so much @Mark, for all your notes. All very interesting and hopeful. Hope you had a great day.

    Oh, I did.

    And a long and extremely tiring one too…I'm out of here any minute now…:D

  • voner May 30, 2015, 12:44 am
    Mark

    Well, there's this…
    http://en.wikipedia.org/wiki/Eotaxin

    One of the 3 is associated with cannabis use and schizophrenia, one with aspirin-associated respiratory disease, and one is expressed in endothelial cells. Plenty to chew on there. Let's hope it's specifically the 3rd type that's elevated, and it's another clue pointing at the endothelium, rather than a reflection of what many of us find effective as a painkiller…

    mark,

    I was hoping for more than a Wikipedia page explanation…..

    i hope you sleep well.

  • Scarecrow May 30, 2015, 12:47 am
    Mark

    Well, there's this…
    http://en.wikipedia.org/wiki/Eotaxin

    One of the 3 is associated with cannabis use and schizophrenia, one with aspirin-associated respiratory disease, and one is expressed in endothelial cells. Plenty to chew on there. Let's hope it's specifically the 3rd type that's elevated, and it's another clue pointing at the endothelium, rather than a reflection of what many of us find effective as a painkiller…

    In the CSF study it was CCL11, the first type:

    http://forums.phoenixrising.me/inde…in-and-hornig-is-out.36607/page-3#post-580584

    It's associated with poorer cognitive performance (in mice, at any rate).

  • geraldt52 May 30, 2015, 12:55 am

    It seems inadequate to just say thank you to all who contributed…but thank all of you anyway. I don't know how you were able to muster the stamina to do it. Hopefully the experience was as rewarding as it appears it was. Rest now!

  • jimells May 30, 2015, 1:03 am
    Kina

    It's a real eye opener and very exciting for me to be able to attend IiME.

    You are there like, in the flesh, not by video or something? I am so happy for you to feel well enough to attend.

  • Mark May 30, 2015, 1:07 am
    Scarecrow

    In the CSF study it was CCL11, the first type:

    http://forums.phoenixrising.me/inde…in-and-hornig-is-out.36607/page-3#post-580584


    Yuk.

    It's associated with poorer cognitive performance (in mice, at any rate).

    And also with current cannabis use. Wouldn't surprise me if the association is just due to that – I would imagine it's a fairly popular painkiller for ME/CFS patients in the US, especially in states where it's legalised. Several MS and ME/CFS patients have told me it's the only painkiller that works. Then again, whatever the reason why that seems to work as a painkiller for certain conditions, that might also be the reason for this association in ME/CFS patients.

    Anyway, if it is a dead end there's plenty more to be working on…there are just so many promising avenues these days. That's a good indication that you know more now, when you find you have masses more unanswered questions than you did before…

  • voner May 30, 2015, 1:08 am
    Scarecrow

    In the CSF study it was CCL11, the first type:

    http://forums.phoenixrising.me/inde…in-and-hornig-is-out.36607/page-3#post-580584

    It's associated with poorer cognitive performance (in mice, at any rate).

    scarecrow,

    thanks for the lead.

    here's a quote from the recent Horning CSF study:

    ….The presence of an allergic-type diathesis in the CNS of individuals with ME/CFS is further supported by the finding of increased CSF levels of CCL11 (eotaxin, a chemokine involved in the selective recruitment of eosinophils, an allergy-associated white blood cell subset48) in ME/CFS subjects relative to ND control subjects. CSF, as a reflection of the microenvironment of the CNS, may provide unique clues to the pathogenesis of ME/CFS. Although increased CSF CCL11 and CXCL10 levels in ME/CFS subjects, along with dysregulation of IL1 signaling, suggest the possibility of an allergic process in central compartments,49,50 such patterns may also be seen in a wide range of CNS infections……..

  • Mark May 30, 2015, 1:08 am
    voner

    mark,

    I was hoping for more than a Wikipedia page explanation…..

    i hope you sleep well.

    Thanks, I hope to, although this bed is making me itch like crazy. Wiki was best I could do – sorry.

  • nandixon May 30, 2015, 1:36 am
    Scarecrow

    Some in the thread discussing the CSF study, starting here:
    http://forums.phoenixrising.me/inde…in-and-hornig-is-out.36607/page-2#post-580528

    There's some additional info on eotaxin higher up in that thread as well, so it might be helpful to start at the beginning of that thread.

    Note that there's an anti-eotaxin-1 (anti-CCL11) monoclonal antibody called Bertilimumab that might be interesting for ME/CFS researchers to look at:

    http://forums.phoenixrising.me/inde…in-and-hornig-is-out.36607/page-2#post-580527

  • Keela Too May 30, 2015, 6:21 am

    Thank you @Kina and @Mark for your comments from the conference. This is all so encouraging and exciting.

  • aimossy May 30, 2015, 7:57 am

    @Kina thank you so much. The tweets were coming out so regularly and so clear I was thinking a 'Healthy' would be tired from this. I stayed up through the night to read them :) Thanks for putting them into a write up @mango
    @Mark that snippet was brilliant. I am so looking forward to the reports. I was personally interested in what was going to be in the talks about vision at the conference – this 'stuff' is measureable. It's amazing how they can pinpoint dysfunction through testing in this area. I think it is exciting. I feel a sense of real progress this year and of things beginning to consolidate.

  • Scarecrow May 30, 2015, 9:05 am
    Mark

    And also with current cannabis use. Wouldn't surprise me if the association is just due to that – I would imagine it's a fairly popular painkiller for ME/CFS patients in the US, especially in states where it's legalised. Several MS and ME/CFS patients have told me it's the only painkiller that works. Then again, whatever the reason why that seems to work as a painkiller for certain conditions, that might also be the reason for this association in ME/CFS patients.

    Ah, yes. I failed to connect the first time. I may – or may not – have too much eotaxin!

    Mark

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

    It's odd that neither the CSF nor the plasma studies showed levels of 33 times the controls in the long duration patients. Here's the link to the plasma graphs:

    http://forums.phoenixrising.me/inde…ut-now-press-release.35880/page-2#post-565042

    I wonder what 33x refers to? Hmmm.

    Mark

    Anyway, if it is a dead end there's plenty more to be working on…there are just so many promising avenues these days. That's a good indication that you know more now, when you find you have masses more unanswered questions than you did before…

    :thumbsup:

  • Scarecrow May 30, 2015, 9:11 am
    nandixon

    There's some additional info on eotaxin higher up in that thread as well, so it might be helpful to start at the beginning of that thread.

    Sorry! I missed all the info you gave by one post. I'll go back and edit my link.

    Thanks :)

  • Sasha May 30, 2015, 9:24 am
    Bob

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

    Yes, but just kidding! 😎 Perhaps we are just highly sociable! :woot:

  • Sasha May 30, 2015, 9:31 am

    Is Dr Bansal thinking of writing up this stuff on pupil reflexes, as far as you know?

    It would be good if he could be persuaded to do it…

  • Sasha May 30, 2015, 9:33 am

    Thanks for the terrific and hopeful summary, @Mark! It's so great to get some info quickly.

    That's fantastic that the UCL team have identified what might indicate patients who will respond to the treatment. Can't wait for the trial now!

  • Sasha May 30, 2015, 9:43 am
    Mark

    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.

    That sounds very useful – has she got a demo of that on Youtube? If not, I wonder if she could be persuaded to get a demo filmed.

    I think there's a real need for publicly visible videos for patients on strategies for energy management that are based on a real understanding of the organic realities of the disease, and her approach sounds as though it is.

  • Mark May 30, 2015, 10:19 am
    Sasha

    Is Dr Bansal thinking of writing up this stuff on pupil reflexes, as far as you know?

    It would be good if he could be persuaded to do it…

    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…

  • Mark May 30, 2015, 10:27 am
    Sasha

    Thanks for the terrific and hopeful summary, @Mark! It's so great to get some info quickly.

    That's fantastic that the UCL team have identified what might indicate patients who will respond to the treatment. Can't wait for the trial now!

    Ah – well said Sasha, you're right that the real point of that work is to start getting a handle on a biomarker to identify who's going to respond. That will be important in the future, if it's found that only a proportion of CCC patients benefit from Rituximab; policymakers are going to want some idea of who will respond, and won't want to roll it out if lots of people could be harmed by it.

    I'm afraid we do have a wait ahead though. Fluge and Mella themselves won't have much idea how well it's working out until the trial's unblinded in the summer of 2017. After that, the analysis and the wait for publication…and then the political battle for regulatory approval can begin. If further studies are required to get full approval for rolling the treatment out, we may be 5 years or more away from approval for Rituximab. On a brighter note, Fluge joked that the thing that scuppers Rituximab might just be their other ME study, Cyclophosphamide: that drug works on a shorter timescale and, since it's cheaper, studies are easier to set up. So we may conceivably get the Cyclo approval before Rituximab…

  • aimossy May 30, 2015, 10:31 am

    I think the pupil reflexes thing has been talked about on the net as evidence for adrenal fatigue. I'm not saying it is caused by that of course – no research has been done on it. But that is where I've seen talk about pupil reflexes as a test for adrenal fatigue.

  • Mark May 30, 2015, 10:35 am
    Sasha

    That sounds very useful – has she got a demo of that on Youtube? If not, I wonder if she could be persuaded to get a demo filmed.

    I think there's a real need for publicly visible videos for patients on strategies for energy management that are based on a real understanding of the organic realities of the disease, and her approach sounds as though it is.

    Good idea.

    She mentioned Yoga and Tai Chi, and I've seen patients on forums railing against that sort of thing, and the 'gentle stretching' exercises, as if all that is some kind of 'GET lite'. 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 and her practical tips for Energy Management are completely rooted in a deep understanding of PEM. She's so much associated with the best lab work to date demonstrating PEM/PENE, that I would hope that if the patient community can hear all this from anyone, it would be from her. 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…:eek:

  • Scarecrow May 30, 2015, 10:51 am
    Mark

    She mentioned Yoga and Tai Chi, and I've seen patients on forums railing against that sort of thing

    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.

  • Sasha May 30, 2015, 10:55 am
    Mark

    Good idea.

    She mentioned Yoga and Tai Chi, and I've seen patients on forums railing against that sort of thing,

    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.

    We have so little energy that we need to focus on the key moves that will give us the maximum benefit, and avoid the ones that will hurt us (but would be great for healthy people).

    That's why what Prof. Keller did at the conference sounds so helpful.

  • Bob May 30, 2015, 11:04 am

    I don't think yoga etc, would necessarily be wise for bed bound folk. Could cause a major flare.

  • Scarecrow May 30, 2015, 11:13 am
    Bob

    I don't think yoga etc, would be helpful for bed bound folk. Could cause a major flare.

    Possibly because of the OI issues Sasha mentioned. Stretching would presumably be helpful though.

  • Bob May 30, 2015, 11:19 am
    Scarecrow

    Possibly because of the OI issues Sasha mentioned. Stretching would presumably be helpful though.

    I'm thinking more along the lines of small amounts of energy expenditure or stimulation causing flares. We don't all have significant OI issues – that seems to be a subset of us.

  • Jonathan Edwards May 30, 2015, 11:20 am
    voner

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

    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.

    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.

    But the most encouraging bit was that Brooks knew exactly why he had been invited because he was aware of the Japanese PET study we have discussed over the last year and had thought it interesting. He indicated that there was interest in repeating it in the UK. His main reservation was that the study was small, but that is no criticism. He said that he thought the signal that was reported was very much the sort of signal that is of interest in the context of other disorders studied in more detail. And his explanation of the background brain stem signal that increases with age meant that we could see why the additional cortical signal in the Japanese CFS patients was of interest.

    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.

    On the other hand the sort of MRI modalities that Neil Harrison is looking at may also be good for looking at longer term microstructural changes. He was using magnetisation transfer, which can pick up changes in the biochemistry of the brain that are not just a matter of which bit is being used at that time. He is studying the way brains respond to 'sickness triggers' like typhoid vaccine and interferon therapy. There are still puzzling questions about why certain bits of brain seem to respond to these more than others but certain findings are consistent and no doubt the story will become clearer fairly soon.

    I have a feeling that we are looking for two sorts of causal element in ME studies. I suspect that what gets the problem going may in at least a proportion of cases be one of a range of different immune problems. So we need to keep looking for signs of different immune disturbances in different people. Then I suspect, next in line in the chain, there is some rather homogeneous problem going on in the brain that explains brain fog and maybe a lot of the autonomic and sickness type symptoms. That might be expected to be in brain stem and limbic areas. It is interesting that data already available suggest some things that are expected and some things maybe not quite as expected – which is good.

    An important part of this sort of angle is that people at the workshop did not need to feel they were 'in competition' with anyone else about the causes of ME. Everyone was trying to do their bit of the jigsaw and fit it together with other people's.

  • Sasha May 30, 2015, 11:41 am
    Bob

    I'm thinking more along the lines of small amounts of energy expenditure or stimulation causing flares. We don't all have significant OI issues – that seems to be a subset of us.

    This is the issue with say 'do some yoga'! Some things are just stretches, some use passive weight to stretch, some involve just lying there, some of it is breathing. There's such a lot of different things that it's useless to recommend it in a blanket way and expect patients to know what to do.

    This isn't aimed at Prof. Keller, by the way! I wasn't at the conference and didn't hear how she put her recommendation. But I've seen people say 'do yoga' plenty of times and it's just not a helpful thing to say.

  • Sean May 30, 2015, 12:38 pm

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

    :p

  • Bob May 30, 2015, 1:07 pm
    Jonathan Edwards

    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

  • Sidereal May 30, 2015, 1:10 pm

    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.

  • Marco May 30, 2015, 1:11 pm
    Jonathan Edwards

    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!).

  • SOC May 30, 2015, 2:14 pm
    Scarecrow

    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.

  • leela May 30, 2015, 4:29 pm
    Mark

    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

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

  • mango May 30, 2015, 4:44 pm

    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:

    Bob

    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! :))

  • alex3619 May 30, 2015, 5:39 pm
    mango

    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?

  • SDSue May 30, 2015, 5:47 pm

    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! :mug: Big thanks!

  • medfeb May 30, 2015, 6:57 pm

    Fantastic job, Kina. Thank you!

  • MEMum May 30, 2015, 7:15 pm

    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.