Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

[Geoffrey Hallmann]

#IACFSMEConf

Lily Chu - Deconstructing Post-Exertional Malaise

ORIGIN
- term around for 50 years - arose from Ramsay
- CDC used it in 19946
- Term is confusing
- In 2000 - meeting

What is the Evidence of PEM?
- clinical experience and patient advocates
- Clinical studies: valuable but limited
* few question patiently directly
* 1 or 2 symptoms only
* short duration

METHODS
- 200 patients from 2010
- recontacted for survey in 2016 (144-146 replied)

RESULTS
- 98% endorsed PEM on screening
- With Emotional distress - PEM not experienced
- Asked about 11 different symptoms examined
- Open ended questions raised multiple other symptoms
- Immune/Inflammation symptoms (sore throat, flu-like symptoms, tender points, etc)
- Following onset - persistently said it was 24 hours or more (most common answer - it can vary)
- Duration - Most said it last longer than 24 hours (most common answer - it can vary)

CONCLUSION
- PEM was associated with multiple symptom onsets
- Onset varied a lot but consistent delay after 24 hours
- PEM varied a lot but generally last longer than 24 hours

IMPLICATIONS
- educate clinicians
- help with diagnostic tools (bed side)
* Explore effects of PEM triggers beyond PEM triggers
- Examine beyond pain and fatigue
- Extend and adjust times of assessment

 

[Geoffrey Hallmann]

#IACFSMEConf

Dr. Sarah Knight

Cognitive Function in Adolescents with CFS/ME: A Novel Paradigm

ME/CFS often thought of as an adult illness - also affects children

How Common
- Estimates vary widely - up to 2%

Functional Impact
- Is significant
- occurs at a time of development
- missed schooling
- impacts future opportunites

Role of Brain in ME/CFS
- unknown
- studies have examined neuroinflmmatory
- variable impacts on cognitive and intellectual functioning
- reduced processing speed, working memory, inhibitory control, attention and verbal learning

STUDY
Aims
- examine baseline fatigue and cognitive
- examine change in these factors at beginning and end of exertion
- relationship to fatigue severity

Inclusion
- 13 18 years

Measures
- Cogstate
WEIS - II
WEIT-II
Visual analogue scale of fatigue
PedsQL Multidimesnional Fatigue Scale
Sleep Wake scale
Sleep hygiene
Spence Children's Anxiety Scale
Hospital anxiety and hospital scale

DESIGN
25 patients
25 Controls

FINDINGS
- Greater levels of fatigue
- Greater sleep difficulties
- No difference in depression/anxiety or sleep hygiene

- Significance for speed processing and attention pre and post
- No differences in the magnitude of change over time
- Patterns show poorer performance in ME/CFS over time

CONCLUSION
- higher rates of fatigue
- reduced sustained attention and processing speed

CLINICAL IMPLICATIONS
- health professions and schools need to be aware of it
- will affect classroom performance (towards end of day or exams)

FUTURE DIRECTIONS
- looking at brain imaging results

 

[Geoffrey Hallmann]

#IACFSMEConf

Questions:

Chu - Cognitive v Physical Exertion - yes they need to be studied differently
PEM v Relapse - Relapse is a reduction in function for a prolonged period

Knight - PEM Delayed - what would you recommend?
First trial in what they can do for this patient group
Was a three hour task
Would be interesting to do 24 hours later to see if there are diffrences
Was there any subgrouping with PEM? Have considered many paradigms for future studies - would be interesting. Might look to something like CDC study. Choosing what to do next.

CHU - Comment - Have to take account of respondent burden in doing the tests.

SNELL - Implications for patients taking BETA Blockers.
- see a lot of patients like this
- they do the tests and can still perform maximal tests
- don't always see a blunted heart rate
- cant take out as a confounding variable
- never ask patients to come of BETA Blocker
- in research might not use these patients because it is an ethical issue

VAN NESS - Mechanism
- vascular shifts
- change in blood volume
- not due to fluid shifts
- blood volume - didn't detect differences - did test one on saline for two years and he performed better.

SNELL
Routinely give the patient a questionnaire
Although self-report - is believed by judge or jury even if not by insurance company

 

[Sasha]

Cort still heroically tweeting:

https://twitter.com/CortJohnson

 

[Jo Best]

Bit confused about the comments on ICD-10 - regardless of differences of professional opinion over sufficient inflammation to justify the name, ME and PVFS are coded in ICD-10 at G93.3 and WHO added CFS to the alphabetical index of ICD-10 with a reference to G93.3 so according to WHO, ME, PVFS, CFS are all ICD-10 G93.3.
US has decided to code CFS differently in their clinical modification to ICD-10 w/e Oct. 2015 so that was an unnecessary muddying of the waters. It may well transpire that what they are currently researching as ME/CFS is better classified elsewhere than as neurological, but that is how US should code CFS for the time being.

 

[Sasha]

I didn't realise that Cort had actually written a pre-conference blog:

http://www.healthrising.org/forums/...rings-the-goods-last-days-for-discounts.4951/

Haven't read it yet.

 

[Jo Best]

The charity set up a new site dedicated to the Invest in ME Research Centre of Excellence this month fyi anyone who's not seen it. Hope this links to the news page - http://www.cofeforme.eu/ - Fane Mensah is at IACFS.

https://twitter.com/i/web/status/792026419471810560

 

[panckage]

SNELL - Implications for patients taking BETA Blockers.
- see a lot of patients like this
- they do the tests and can still perform maximal tests
- don't always see a blunted heart rate
- cant take out as a confounding variable
- never ask patients to come of BETA Blocker
- in research might not use these patients because it is an ethical issue

Anymore information on this?

- they do the tests and can still perform maximal tests
- don't always see a blunted heart rate

Specifically the above sounds quite positive (? )

 

[Jo Best]

Dr. Jo Cambridge was in Sweden too I don't know if this will work as first time I've embedded a tweet here I think. Here goes..

<blockquote class="twitter-tweet" data-lang="en"><p lang="en" dir="ltr">Hello Stockholm! Wearing wild socks to support ME/CFS biomarker discovery. <a href="https://twitter.com/hashtag/ME?src=hash">#ME</a> <a href="https://twitter.com/hashtag/MECFS?src=hash">#MECFS</a> <a href="https://twitter.com/hashtag/severeME?src=hash">#severeME</a> <a href="https://t.co/7wSjdCAoDx">pic.twitter.com/7wSjdCAoDx</a></p>&mdash; Lucinda Bateman (@LBatemanMD) <a href="

https://twitter.com/i/web/status/788997971077656576

">October 20, 2016</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>

The tweeting has started up again:

https://twitter.com/i/web/status/791706199905427456

Great - give us the drugs!

 

[anciendaze]

As I understand this device was produced in a similar way to a microprocessor, as such it is probably very expensive and not viable to mass produce, I think it was mainly intended as a proof of concept and or for drug testing to find a cure.

We can probably assume that diagnostics on regular people or existing patients would be done with metabolomics or chemical specific tests at some point

Sorry to disagree, but we are already seeing 16 nm. electronic devices for mass markets, and the big problem at the moment is with 14 nm. fabrication, which will probably come through in quantity in another year, though some 14 nm. devices were shipped to consumers in 2014. Devices with 18 nm. features are already out there. In fact the Nvidia Geforce 10 series is based on 16 nm. features. The complete graphics card is expensive, but individual component chips are not that big a cost. Part of the cost comes from the sheer amount of memory or the number of processing units required to compete with existing products. This would scarcely be a factor for a medical product with no current competition. The individual devices Ron is talking about should be simpler than the CUDA cores in those Nvidia graphics cards, which use thousands of them.

Start up costs for a medical test chip will be high, but part of this has already been done for other purposes, and part can be shared with other medical uses looking for different biochemicals.

This takes us to the question of what you consider expensive. Would $1,000 for reliable and useful diagnostics be too much? Ultimate costs will be much lower. I've already thrown away $100 devices with gigabytes of RAM and quad-core processors because I could not update the software. If you haven't lived through these changes it is hard to appreciate the effects of a technology scaling this way.

 

[Jo Best]

He presented this case at Invest in ME in 2015. It illustrates the flaw of OMF big data study, NIH study, etc. where enterovirus serology is ignored in favor of serum PCR which will fail to detect persistent tissue infection which has been demonstrated repeatedly by different researchers.

Professor Malcolm Hooper said in a comment about the MEGA study his week, "The earlier work on enteroviruses must be kept in mind." - https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/524776730

 

[ash0787]

Depends how different the fabrication process is anciendaze, the complexity of the thing is no doubt vastly lower
but they might not be able to use the same tools to produce it

It might seem good value for money even at those prices but doing things in a manner more akin to how a regular blood test is done might be 10x cheaper

 

[Tom Kindlon]

https://twitter.com/i/web/status/792422471785938944

https://www.facebook.com/TomKindlon...41828.656049027876559/712819162199545/?type=3

 

[user9876]

It was somewhat difficult to hear, but Dr. Davis mentioned the development of a device that attaches to the camera of a smart phone (like an iPhone) which performs some kind of magnetic levitation-based cell sorting. The computing power of the iPhone then performs an optical blood assay using the iPhone's camera. It's very inexpensive (~5 cents/assay) and quick ("you can see the results in about 20 minutes"). An example that he gave was that you could see if a cancer drug was killing cancer cells.

I suspect a few companies are looking at this. Here is an article from HP talking around some ideas
http://www8.hp.com/us/en/hp-labs/innovation-journal-issue3/blended-reality-for-life.html
what is perhaps interesting is that they have a huge business with cheap and very accurate handling of liquids (ink). Also they have work on nano sensors.

 

[ash0787]

Does anyone have more information about the experiment where they transferred cells from one persons blood to another and the behaviour changed ? something about that approach appeals to me.

 

[AndyPR]

Does anyone have more information about the experiment where they transferred cells from one persons blood to another and the behaviour changed ? something about that approach appeals to me.

Wasn't that a more or less throwaway remark by Ron Davis? And as he says in the video, he has no intention of publishing anything, he'll leave that to everybody coming along behind him, as he's in an obvious rush to cure Whitney.

 

[BurnA]

Wasn't that a more or less throwaway remark by Ron Davis? And as he says in the video, he has no intention of publishing anything, he'll leave that to everybody coming along behind him, as he's in an obvious rush to cure Whitney.

Yes I get the impression Ron Davis is about 2 years ahead the game if not more.
It's great that he is pushing the limits but because publishing is the least of his worries we may not hear of all his work for a good while after it is done.
Hopefully we will just wake up some day and Ron will have found a cure !

 

[Tom Kindlon]

https://twitter.com/i/web/status/792444474202947584

 

[Seven7]

Anymore information on this?


Specifically the above sounds quite positive (? )

If you use beta blocker while on the TTT or any of those, you will not see the real issues. I still ask what is my new AT while in beta blockers and haven't gotten any answer from any of the doctors and to be honest not wanting to pay the 800$ just to find out (do a new excercise test while on the bb)

 

[ZeroGravitas]

Does anyone have more information about the experiment where they transferred cells from one persons blood to another and the behaviour changed ?

According to Cort's Oct 15, 2016 blog post there's been nothing recent except work by Fluge and Mella (which I'll have to have a look for...[Edit: found nothing.]):

The idea that something in ME/CFS patient's blood may be turning off the mitochondria or natural killer cells or what have you is not a new one. Although no new studies have come out, reports indicate that the natural killer cell problems in ME/CFS apparently disappear when NK cells from ME/CFS patients are put into a healthy person's blood. Conversely, healthy NK cells poop out when put into ME/CFS patient's blood. Fluge and Mella are finding that healthy muscle cells act strangely when cultured with ME/CFS patient's blood.

Anyone else been feeling that all these developments are happening too fast and wishing things would slow down a bit.... Then having to check yourself?! Lol.