OSLO CFS Conference report 18th october 2011

[Guest guest]

This is just a small attempt at a description of this conference for those

interested, and is no way to be seen as a full report.

Please take caution that there can be some errors in the information as it is

from my memory and quick notes while there.

ME conference for health professionals 18th october.

It was not overcrowded, about 100 people were attending this conference.

The speakers chronologically were:

Barbara Baumgarten

Nigel Speight

Natelson

Stig Jeansson

De meirleir

Halvor Næss

Gudrun Lange

Øystein Fluge

Barbara Baumgarten

Barbara Baumgarten talked about diagnosis of CFS in adults and this was directed

towards

medical doctors and medical personnel.

This is an important educational job and she did a good job describing CFS and

talking in clear manner.

Nigel Speight

Nigel Speight is a pediatrician, he seems like a very compassionate and caring

doctor. His working conditions in UK seem to be somewhat cursed by the

psychobabble lobby and he does a very good job of standing up for children with

CFS and his work help push the acceptance of CFS as a real biological disorder.

Easy to understand. He give immunoglobulins to the sickest patients and have

moderately good results with this. Wants more studies on immunuglobulins done.

Is critical of one sided cbt and exercise as treatment options.

Stig Jeansson

Stig Jeansson gave a very easy to grasp speech for the layman about viruses,

there were not so much new stuff. Why does it have to be only one virus in CFS ?

Many syndromes can be caused by DIFFERENT microbes.

He talked about three forms of infection

hit n run

occult, latent infection

chronic infection

some viruses are temporary like the common cold, but others get beaten by our

immune system but never eradicated. They are suppressed but can be awakened.

Herpes and enterovirus family plays such a role and could still be a factor in

CFS although what kind of role is not so clear. Enterovirus sometimes gives a

chronic infection in the gut.

In people with antibodies to such an infection gut biopsies confirm with 80 %

that they have an active infection.

Treatment: Immunoglobulins, valganciclovir

Hopefully medical science will progress in the field of microbes and be able to

tell about cause and effect and role of viruses in chronic and not just acute

illnesses. Entertaining speaker.

Halvor Næss

Halvor Næss is a neurologist in Bergen and it is always nice to see a

neurologist with an

acceptance of CFS as something real. He came into the CFS world after getting

referred a number of patients after a Giardia epidemic in Bergen. 2500 persons

were treated with Flagyl, 1200 were found to have Giardia. Many got IBS after

and fatigue as a hallmark symptom. EEG measures showed abnormalities.

He talked alittlebit of fatigue after brain infarction and circulatory

disturbances related to fatigue.

His talk was alittle technical

Natelson

Natelson is a very well known name in CFS community but was not so

known to me.

He gave a very interesting talk about ongoing research, on biomarkers and about

work being done

on the autonomic nervous system. Very knowledgeable man. Hopefully his research

will bring us closer soon. He talked about obstructive sleep apnea how it can be

a factor. He is interested in the overlap between CFS and FM and hope to find

strategies so they can split and define the various disorders and subgroups.

Serotonin seems to be upregulated in CFS but down in FM.

FM but not CFS tend to respond to antidepressants.

Some CFS have underlying encephalopathy.

Cerebral bloodflow

MRI lesions.

In spinal fluid they find elevated protein.In 30 % its significantly outside

normal range.

XMRV negative in spinal fluid.

IL-10 is high during sleep.

The following areas are of interest for biomarkers.

Brain spectroscopy

high lactate

Sjogrens overlap

Orthostatic intolerance especially high vs controls is Orthostatic hypocapnia.

This is hyperventilation when standing. This is because of intrathoracic

hypovolemia.

I did not get why they think this is happening but there is some problem with

the gravitational regulation of blood and blood volume and the body compensating

mechanisms.

Its chemokine driven and not psychological.

The result is believed to be circulatory problems and hypoxemic events in the

brain

Seen in some pots, but while pots is more common in children they believe adults

get hypocapnia.

I think n have some new studies coming up here.

Spinal fluid proteins

They found thru proteomics 738 unique proteins compared to post lyme and

controls.

They hope to bring it down to 2-3.

They think it can be a matter of hit n run immune activation and that the immune

system

has become permanently upregulated or disordered after the virus is gone.

De Meirleir

De Meirleir is ofcourse always interesting. Had a bit of a brief and

fast presentation. He basically gave an summary over CFS research and some major

conference reports during the last year. He did not go much into his own

research or treatment approach.

He said gut research is really getting popular and not because of CFS. It is

something that is gaining

importance in many fields. He said that in the last 3 months there have been

more papers than in the last few years. Sounds like good news.

I found it interesting he mentioned alittlebit on VIP, vasoactive instinal

peptides.

He mentioned Don Staines and Doina Ganea.

http://www.ncbi.nlm.nih.gov/pubmed?term=don%20Staines

http://www.temple.edu/medicine/faculty/g/ganead.asp?pms=%28ganea%20D%5Bau%29

On XMRV De Meirleir is not conclusive he says time will tell.

About microflora he says its altered to favour of prevotella, assaccharobacter,

lactonifactor

and eubacterium and one or more of these are also known to disrupt gut lining.

Something which is long suspected in CFS.

Gut flora modulation can be important. The complete role they have in gut and

immunity is what needs to be understood.

He also talked about C.Roelant and his research about surface proteines on

cells, something

which is studied alot in cancer.

The shift from th1 to th2 is controlled by redox status.

Cheney and DM are interested in Nagalase activity.

It cleaves gcMaf which is the binding protein of vitamin d.

Nagalase activity in CFS is too high, might be a good biomarker.

Their hypothesis is that B-cells are less effective.

Shoemaker is supposedly treating with VIP.

It lowers c4a and tgf-beta1

He finds VIP deficiency in 98 % of people with CFS(!)

VIP is used intranasally 50 mcg 4x/day

Study about this is reported to be published soon.

Gudrun Lange

Gudrun Lange talked about neuropsychological findings.

I was alittle disappointed to learn that they dont really know what the findings

mean.

And they need more integrated testing to get the full picture of whats going on

in the patients.

She said it is important to get diffusion tensor imaging done in CFS.

Øystein Fluge

Fluge asked for discretion since his paper is due to be in the immediate future.

There were forbidden to take photos of any slides

I dont really know what I can say about this speech but I will say alittle, most

of it is already known on the web.

Are this study one of the most interesting in the CFS world in recent years?

Time will tell.

We dont know yet the long term effects and more studies are definetly needed.

Why cant US pick up on this?

Basically Fluge and Mella were oncologists with no interest in CFS whatsover,

but a few years ago

they had a patient with Hodgkins lymphoma and CFS and after cancer treatment

with MIME (amongst Methotrexate) The patient better to such a degree, they

realised they had stumbled upon something.

A small study was done with 3 people.

The initial study is here:

http://www.ncbi.nlm.nih.gov/pubmed?term=fluge%20%2B%20cfs%20

The new study is with 30 patients.

They have 2 ongoing studies in Norway.

Their findings have caught their interest in CFS

On the basis of their discoveries they are trying to piece together a picture of

whats going on in CFS.

They think evidence points to CFS as being an autoimmune disorder.

They use the drug Retuximab.

The patients have an improvement in all (!) cfs symptoms which in Fluges words

point to the medicine touching upon a central disease mechanism.

They feel the medicine is safe and have merit in literature but at the same time

its manipulating the immunity on a high level, not something to be taken

lightly.

After 4 years they have seen no adverse effects.

They need money for more research.

They got money for research from the cancer research budget.

Patients get better for months, most relapse after a certain amount of time.

Some report remarkable improvement. Can the change be made permanent, can

patients be given maintenance therapy for years? More studies needed.

I wont say more here, look out for his paper soon. And hopefully some more

people will

try to replicate these results. He mentioned Sweden, Germany and Us being

interested in this area.

There were talk that some of the slides from the conference speeches

will be published later

I have probably left out alot of details and possibly more important stuff,

sorry.

I you have any questions especially on Natelson, DeMeirleir or Fluge you can

email me

I also have De Meirleirs slides already if anyone want them.

P.