Live tweeting from IiME conference, Friday 3 June 2016

[Comet]

From Ron Davis's abstract, talking about taking samples from bedbound PWME:

 

[Scarecrow]

Preliminary results indicated that glycolysis may be impaired with glucose being routed to fatty acid synthesis.

Possibly more important, the metabolites in the citric acid cycle in the mitochondria were lower than in healthy controls and some almost undetectable.

Sometimes you just can't catch a break.

 

[Bob]

The Invest in ME journal with the conference abstracts has just been published (free to download as a pdf), here.

Speaker bios/abstracts start on page 60 and not all the presentations have abstracts yet.

Also be sure not to miss the section starting on page 46 ("Tackling ME/CFS in New Zealand"), which describes a very interesting research project that I wasn't aware of.

It's generally a very interesting report and I haven't got to page 60 yet! There's a lot to read!

Thanks for posting, Sasha.

 

[aimossy]

Hi @Bob So pleased you noticed!
Some of us are aware of what Prof Tate is up to in NZ although not enough of us are. He is a pretty phenomenal researcher with a great track record. I was SO pleased to see this write up and also see even more about some extra things he is working on. Really pleased this was featured in IiME - I heard Tate couldn't make the conference ( not that I am in the know of things). It was stated on ANZMES FB that Ros Vallings was presenting a paper from Tate at the colloquium.

I hope this feature gets published elsewhere too and not just in the ANZMES organisation magazine. NZ patients need to see this information on our national media (Tate is well known in NZ with family who have the illness) or at least a platform that's easy for sharing, like on the ANZMES website. Tate really need funds and has been doing this work on the smell of an oily rag as we say, they may get more donations from getting more information out there.

 

[BurnA]

From Ron Davis's abstract, talking about taking samples from bedbound PWME:

One point Ron stressed was that because they were taking so many samples at the one time this would make finding a reliable biomarker easier. Ideally you need two components to say your biomarker is robust.
Historically one set of samples is taken, then another and then another etc. So it's hard to know how one set matches another, but because all the OMFs samples are taken simultaneously this is a huge advantage in finding a biomarker.

 

[Sasha]

Also be sure not to miss the section starting on page 46 ("Tackling ME/CFS in New Zealand"), which describes a very interesting research project that I wasn't aware of.

Hi @Bob So pleased you noticed!
Some of us are aware of what Prof Tate is up to in NZ although not enough of us are. He is a pretty phenomenal researcher with a great track record. I was SO pleased to see this write up and also see even more about some extra things he is working on. Really pleased this was featured in IiME - I heard Tate couldn't make the conference ( not that I am in the know of things). It was stated on ANZMES FB that Ros Vallings was presenting a paper from Tate at the colloquium.

I hope this feature gets published elsewhere too and not just in the ANZMES organisation magazine. NZ patients need to see this information on our national media (Tate is well known in NZ with family who have the illness) or at least a platform that's easy for sharing, like on the ANZMES website. Tate really need funds and has been doing this work on the smell of an oily rag as we say, they may get more donations from getting more information out there.

Just flagging this up for @Simon.

I hope someone might do a layperson's summary!

 

[Bob]

Hi @Bob So pleased you noticed!
Some of us are aware of what Prof Tate is up to in NZ although not enough of us are. He is a pretty phenomenal researcher with a great track record. I was SO pleased to see this write up and also see even more about some extra things he is working on. Really pleased this was featured in IiME - I heard Tate couldn't make the conference ( not that I am in the know of things). It was stated on ANZMES FB that Ros Vallings was presenting a paper from Tate at the colloquium.

I hope this feature gets published elsewhere too and not just in the ANZMES organisation magazine. NZ patients need to see this information on our national media (Tate is well known in NZ with family who have the illness) or at least a platform that's easy for sharing, like on the ANZMES website. Tate really need funds and has been doing this work on the smell of an oily rag as we say, they may get more donations from getting more information out there.

The article definitely deserves its own thread. Do you fancy starting a new thread about it? I'll get around to it if you don't.

 

[aimossy]

Hey @Bob could you? I don't want it to look a bit self promoting or that people should go easy on it. I'd love our clever ones to really critique the heck out of it. Part of me is quite taken with the possible design going on here and I'd like to see pros and cons and possible 'real meat' value of this. I do like how Prof Tate talks about the limitations.

 

[Bob]

Hey @Bob could you? I don't want it to look a bit self promoting or that people should go easy on it. I'd love our clever ones to really critique the heck out of it. Part of me is quite taken with the possible design going on here and I'd like to see pros and cons and possible 'real meat' value of this. I do like how Prof Tate talks about the limitations.

Yes, sure, i'll get around to it later today, if no one else does.

 

[Bob]

https://twitter.com/i/web/status/739785023910449152

 

[Sasha]

I wonder who's behind that BRMEC6 sticker!

 

[A.B.]

This cycle generates most of the energy (ATP) for the body. It makes it clear that this is no psychosomatic disease. From preliminary analysis it would appear that not only ATP is low but also ADP, AMP, GTP and in some cases uracile.

These cofactors are involved in hundreds of molecular reactions in the body including in the brain. Their decrease would cause a large number of body functions to be abnormal.

This is going to be very embarassing to certain people that have promoted the idea that having more than a few symptoms in different body parts means that it's psychosomatic.

 

[Scarecrow]

This is going to be very embarassing to certain people that have promoted the idea that having more than a few symptoms in different body parts means that it's psychosomatic.

I know that there has been no suggestion that we are talking about actual mitochondrial disease (and remissions suggest otherwise) but it's still interesting to compare the symptoms of ME/CFS with the possible symptoms of mitochondrial disease.

Note what it says immediately above the photo!

http://www.mitopatients.org/mitodisease

Possible Symptoms
THINK MITOCHONDRIAL DISEASE WHEN THREE OR MORE ORGAN SYSTEMS ARE INVOLVED

BRAIN
Developmental delays
Dementia
Neuro-psychiatric disturbances
Migraines
Autistic Features
Mental retardation
Seizures
Atypical cerebral palsy
Strokes/Stroke-like episodes

NERVES
Weakness (may be intermittent)
Absent reflexes
Fainting
Neuropathic pain
Dysautonomia - temperature instability
other dysautonomic problems

MUSCLES
Weakness
Cramping
Dysphagia (swallowing problems)
Gastrointestinal problems
Dysmotility
Irritable bowl syndrome
Hypotonia
Muscle pain
Gastroesophogeal reflux
Diarrhoea or constipation
Pseudo-obstruction

KIDNEYS
Renal tubular acidosis or wasting

HEART
Cardiac conduction defects (heart blocks)
Cardiomyopathy

LIVER
Hypoglycemia (low blood sugar)
Liver failure

EARS & EYES
Tinnitus
Hearing loss and deafness
Visual loss and blindness
Ptosis
Ophthalmoplegia
Optic atrophy
Acquired strabismus
Retinitis pigmentosa

PANCREAS & OTHER GLANDS
Diabetes and exocrine pancreatic failure
(inability to make digestive enzymes)
Parathyroid failure (low calcium)
Diabetes

SYSTEMIC
Failure to gain weight
Fatigue
Unexplained vomiting
Short stature
Respiratory problems

 

[Bob]

There's a new link for ordering conference DVD's:
http://www.investinme.eu/IIMEC11-DVD-Order.shtml

 

[znahle]

https://www.facebook.com/groups/5804522506/permalink/10153712762632507/

My dear Sasha, I was flying blind on faces at the meeting because I still don't know the corresponding screen names on Phoenix Rising...why did you not grab me? I know now you were at that dinner! so wonderful to have been in your company. Excellent meeting! the only one I could match is Jonathan Edwards as we chatted a bit (what an inspirational leader!)
Z

 

[znahle]

I wonder who's behind that BRMEC6 sticker!

Pia

 

[Sasha]

My dear Sasha, I was flying blind on faces at the meeting because I still don't know the corresponding screen names on Phoenix Rising...why did you not grab me? I know now you were at that dinner! so wonderful to have been in your company. Excellent meeting! the only one I could match is Jonathan Edwards as we chatted a bit (what an inspirational leader!)
Z

A bit of confusion here - I wish I had been at that meeting but whoever it was you met, it wasn't me! I think I must have misphrased something in my post to give you that impression. I'm not able to attend conferences and meetings, alas, but am very grateful to those who do. Glad you had such a productive and enjoyable time!

Pia

What a shame she stickered herself out!

 

[Sasha]

Conference postcript from IiME:

http://investinme.eu/IIMEC11-news Pre-Conf-Postscript.shtml

 

[Sasha]

Cort Johnson's first write-up of the conference, based on the tweets and other material. Nothing new but an interesting perspective...

Bad Bacteria, Brainstem Abnormalities and Progress with Rituximab: the Invest in ME Conference #1
by Cort Johnson
Jun 9, 2016
http://www.healthrising.org/blog/20...-progress-invest-me-chronic-fatigue-syndrome/

I hadn't noticed this in the tweeting:

He found that the exercise test produced an explosion of sympathetic nervous system activity and triggered an episode of reversible tachycardia e.g. a temporary case of postural orthostatic tachycardia syndrome (POTS) in about 50% of ME/CFS patients but not in any controls. Finding that exercise dysregulates the autonomic nervous system to such a degree that it that it temporarily causes POTS is a major finding.

 

[Sasha]

Cort Johnson's first write-up of the conference, based on the tweets and other material. Nothing new but an interesting perspective...

Bad Bacteria, Brainstem Abnormalities and Progress with Rituximab: the Invest in ME Conference #1
by Cort Johnson
Jun 9, 2016
http://www.healthrising.org/blog/20...-progress-invest-me-chronic-fatigue-syndrome/

A comment from Dr Kent Holtorf on Cort's article:

Great article Cort. We have started checking the PANDAS autoantibody panel (Cunningham panel) and are finding a good correlation with symptoms (the test is expensive, however).

Been hesitant to do Rituxamib because we have found almost all CFS/ME patients have abnormally low CD19/CD20 cells, so not sure if want to lower them even more??

This is great research. Been doing LDN, IVIG and peptide immune-modulators with some success. Looking into doing plasmaphoresis.