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

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Ysabelle-S

Highly Vexatious
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524
Geoffrey Hallmann said:
#IACFSMEConf

Whittemore just gave two indications about foreign grants:

1. Mega Study in UK - Would look at discussions on this. Thinks its interesting. Have not discussed with an UK researchers as yet.

2. Grants - Foreign grant applications have an extra level of scrutiny to them. The NIH would look at whether a foreign research site had a particular uniqueness to it - such as a specific expertise or cohort.
Click to expand...

With regard to MEGA, the kind of patient numbers they were talking about were very large, and the omics studies presumably costly. NIH could maybe help with funding, but there is still the concern in UK (and among patients watching from outside UK) about certain biopsychosocial promoters in the list of those involved in MEGA.
 
Seven7

Seven7

Seven
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Geoffrey Hallmann said:
Of significance is the fact that the NIH has never had an application from a young researcher for an NIH grant for ME/CFS. They have put this down to the fact that researchers were scared away from the field. They are actively encouraging grant applications in this area in order to build the research pool.
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Very easy, there is not money in CFS for seed grants (you cannot submit the grant application without a hypothesis) young researchers cannot apply if they do not have money to even start in a hypothesis so they can submit the application for the grant. If we want young researchers we need to establish a program for seed money (young researchers cannot use money from existing grants, since is not legal or ethical and universities do not have funds for this deases.
So the options are seed money grants or make sure universities have start up money for researching ME/CFS
 
Y

Ysabelle-S

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With professional workshops running for the rest of the day, I wonder how much chance there is to catch up on those.
 
Geoffrey Hallmann

Geoffrey Hallmann

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31
Location
Lismore, NSW Australia
Now moving onto Rituximab and Emerging Treatments. Dr. Dan Peterson is introducing the research, with Dr. Oystein Fluge and Dr. Olav Mella.

Peterson says:
* no proven effective treatment that is universally effective
* ME/CFS patients hypersensitive to medications
* Sart low and go slow;
* Multiple medication requested to address symtpoms

Affordability of Rituximab is expensive.

Drug development takes 8 - 15 years. This disease has the market potential but the drug companies aren't driving it. Drug repurposing is one option but drugs can be removed.

Ampligen was denied in 2013. FDA doesn't require a biomarker. Lack of defined end-points was an issue in Ampligen
 
Geoffrey Hallmann

Geoffrey Hallmann

Messages
31
Location
Lismore, NSW Australia
Now moving onto Fluge:

B-Lymphocyte depletion in CFS/ME.

Presentation on their Rituximab trial. Funded by the Kavli Foundation and various Councils and Foundations

* Started with a patient (with aggressive B-cell lymphoma) that had Rituximab and improved - had ME/CFS and had long lasting improvements

The drug target B-cells.

Trial Pilot involved three patients - B-Cell lymphoma - each had different improvement levels. In 2011 they published a small trial. 15 patients and 15 placebo. There was no difference in first three month, but after 6 months those in the drug began to significantly improve. One patient in placebo group got significantly worse.

Decided to do a further test, giving the drug on two occasions to see what result was. The patient was put on the drug with a period of break and reinfusion again. This was enough to encourage them to move to a new study.

The 2015 Plos One paper involved a larger study. Concluded the Drug provided a response. Those with severe ME/CFS had no significant response. The SF-36 was used and scores improved after 6 months. 2 patients had an allergic reaction. 2 had late onset neutropenia lasting -5 days. 8/28 reported transient symptoms worsening after drug.

Limitations were noted in the trial.
 
Geoffrey Hallmann

Geoffrey Hallmann

Messages
31
Location
Lismore, NSW Australia
#IACFSMEConf

Fluge: Is ME/CFS caused by an immunological pathomechanism?

Outlines a number of supportive observations:
* Patterns of responses and relapses after B-cell depletion
* B-cell lymphoma risk
* High frequency of autoimmunity in relatives
* Genetic predisposition
* Mainly females
* Sudden start
* and autoimmune basis has been suggested for partly overlapping syndromes
 
Geoffrey Hallmann

Geoffrey Hallmann

Messages
31
Location
Lismore, NSW Australia
#IACFSMEConf

Olav Mella - Flections on the Rituximab Studies

* are there other possibilities of immune issues in these patients?

IMMUNE MANIPULATIONS
* Not all Work
* Gammaglobulin - helps some. Does it work on immune system or it it unrelated binding to receptors.
* Plasmapheresis and Immunoadsorption - too little data presently. Might be subgroup

CYTOTOXIC DRUGS
* Cyclophosphamide - works on immune system
* Started with patient reports by those with cancer and ME/CFS
* Looked into three drugs used in Norway and arrived at Cyclophosphamide to study.
* was most active on immune system;
* can enhance immune system in low doses
* pilot study - 2/3 responded.
* Phase 2 study doing trial of 40 patients.
* Using 18 month observation study across two centres. Longer period due to slow reactions of some.
* Using Canadian criteria.
* Study still active. Most patients up to 12 months
* Drug works. In some patients it works well and they are surprised by what they have seen
* The broader drug does same job as Rituximab

SYMPTOM MECHANISMS
* Patient symptoms similar but severity different
* Could there be a sub-celluar system in the body affected by disease.
* Candidate: Inhibition of APT (Energy) system
* Supplying energy can help patients but not solve problems of underlying disease
* Mitochondrial dysfunction a major part of disease. Lack of Nitros-Oxide.

FUTURE
* Drug trials are slow but necessary
* Hopes drug industry will see potential and they will move this forward quicker.
 
Y

Ysabelle-S

Highly Vexatious
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Found one tweet (from Cort Johnson) about high dose Vitamin D and Curcumin helping a German MD with ME very interesting. I'm taking both (latter in form of two mugs of Turmeric tea a day), but wondering whether to get actual Curcumin tablets. And I can definitely attest to usefulness of D3. There was another tweet on Younger saying Curcumin was at the top of his list for lowering inflammation in brain.
 
BurnA

BurnA

Senior Member
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2,087
Kati said:
Business as usual. Young researchers are being discouraged from getting into the field, as it would be 'career suicide to do so.
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I obviously don't know how this was described at the conference but you would think one way to get more young researchers would be very simply offer a few large grants, make some noise about them, get a few headlines etc.

I can't believe this isnt all obvious, yet they make out as if it's some form of surprising discovery that no young researchers have applied for funding.
 
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ash0787

Senior Member
Messages
308
Thats a shame, I thought the recent studies might be enough incentive to garner interest, I wonder if it might just be lack of awareness about the mere existence of the disease ? like not on their curriculum for studying at all
 
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