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

A

ash0787

Senior Member
Messages
308
" He suggested getting into the parasympathetic state....a healing time every day. He felt that restorative yoga, times of silence or mediation were all important to healing. "

Yes this is how you recover into relatively good health, the most potent form of this I experience is when I feel a sort of full body sleepyness and unwillingness to move, but its a natural feeling positive sensation rather than an unpleasant one like you would get if you used far too much energy and then you felt an unnatural dire tiredness from your very core. Its not always easy to get into this state though, I cant do it on demand.

The reason I'm having cognitive issues at the moment for example is I got to the point last weekend where I felt like I needed to rest properly, but then my father returned to the house unexpectedly complaining of acute illness which later turned out to be a heart attack, I felt bad about this because I was unable to diagnose it accurately ( primarily complained of nausea / was coughing, omitted to tell us about the unusual chest pain he had for weeks prior ), so my period where I should have gone into 'very low power mode' was disrupted.
 
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Geoffrey Hallmann

Geoffrey Hallmann

Messages
31
Location
Lismore, NSW Australia
#IACFEMEConf

Just a recap of an advocacy session from last night:

Barriers to Effective Advocacy

· Fragmentation

o Numerous small groups and individuals

o Numerous different “asks”

· Conflicting demands (who do external organisations deal with? They ignore all)

· No strong national voice – need one single unified voice

· Stigma and false narratives

US Action Working Group (2015)

· www.usawg.wordpress.com

· Informal mechanism for communication and opportunities for collaboration

· Google group for participants

o Organisations

o Individual advocates

o Bloggers and other communicators

o Welcoming new participants (www.usawg.wordpress.com/join

· Values of Transparency, confidentiality, respect, choice, trust, constructive engagement

· Monthly conference calls (with meeting notes) for communication

· Working groups for collaboration – profit person responsible for each

o Congress, NIH, CDC: Can form others as needed

Solve ME/CFS Initiative

· Solvecfs.org

· Raises money for research on Me/CFS (Seed grants)

· Recently became involve in advocacy:

o Focus on federal agencies

o Goal to increase research funding

#MEAction

· www.MEAction.new

· Grassroots advocacy organisation

o Is an international network of patients empowering each other to fight for health equality in ME

o Actions are driven by the polls and surveys

Recent US Advocacy Actions

· Request for information responses

· NIH Intramural study

· Congressional letter to Dr. Collins with 55 signers

· Appropriations language

· Millions missing protests (25 cities in 9 countries) – May and Sept 2016

· AHRQ Addendum publication (separate out Oxford studies)

· Participation in CDC Technical Development Workgroup (stakeholder roundtable)


Possible Goals for Discussion – How can Advocates help?

· Increase funding for research

· Organise to support research

· Medical education – and change the narrative

· Centres for excellence (and clinical component)

· Public awareness and media research

· Participate

Solve ME/CFS

· Carol Head – President

· Emily Taylor – VP (was in autism advocacy)

· Chris Williams (Board member)

· Was primarily a research organisation

· Seed funding

· Now doing their own research in partnership with academic institutions

· Biobank of tissues and controls

· Patient registry

· Available free of charge to any qualified researcher

Lilly Chu

· Medical and Public Health Background

· IACFSME

· Patient

· Individual advocate and liaison for ME

· 90% are undiagnosed – hence a priority

· Public awareness – discusses it at toastmasters

· Has a support group of over 100 people (put posters up in library)

· Funding – been working with office in Bay area for a few years. Lobbied 2 representatives

MEAdvocacy

· Advocate ME not CFS

· ME is totally left out

Mary Schwietzer

· National organisations are reflective of federalisation

· State and regional and local

· Information flows from top to bottom and in reverse

· No organisation was unrelated

· #MEAction was anarchy with no idea of where decision making would take place

· You have to have national organisations. You must have middle ground. They can’t tell those below how it will be done – it leaves them powerless.

· Willing to help

· Has connections to senator


European ME Alliance

· Now have 13 countries

· They operate in concert with each other

· The use voting and skype meetings

· Use that power

Open Medicine Foundation

· Linda Tennanbaum

· Do advocacy in background

· Hope to get federal grants

· Work on collaborations

· Do things quietly

· Have a scientific advisory board to decide what research they will do

· Will share results openly – to allow learning from each other

· In medical education – they are working on education for various medical and associated areas. Looking to disseminate information to these area

· Centres for Excellence – working on it

· Public awareness – talking to PR firms and trying to use connections to people to move into the celebrity world

ME/CFS Australia

· Federalist system with members drawn from the states

· We have a number of organisation now operating in Australia

· Note there is nothing in the advocacy are involving a legal network of resources and education

Annette Whittemore

· With NIH funds the research centre has to be reserved and not adovacate

· Play the game


Lilly Chu

· Very easy to talk – very hard to do

· Congratulates the attempt to get a national organisation together.

Canada

· Working with department heads of medical training facility

· Ensuring that there is ME/CFS included into the curriculum

· Standardised training program – getting ME/CFS included into this training in a test situation

· Introductory Course for people who think they have ME/CFS or have just been diagnosed with ME/CFS.

Terri

· AIDS activist for many years

· Fell ill recently with ME/CFS

· Very interested in connecting with people for strategies

· Member of Act-up – civil Disobedience strategies

Cort Johnson

· Very impressed by response to the 55 signatories letter

· Need to motivate NIH

· Need to get politicians to push the NIH

· Needs focus
 
Marc_NL

Marc_NL

Senior Member
Messages
471
Maybe someone who is attending can answer this.

I'm really interested if all the presenters also attend all the other presentations in order to learn from each other and have more synergy, I assume so but you never know :)

.
 
D

Denise

Senior Member
Messages
1,095
Marc_NL said:
Maybe someone who is attending can answer this.

I'm really interested if all the presenters also attend all the other presentations in order to learn from each other and have more synergy, I assume so but you never know :)

.
Click to expand...

I am (sadly) not attending this conference so can only relay what has happened at previous meetings.
At other meetings presenters have attended each others sessions, asked questions following presentations, engaged in discussions in the hallways/at meals, etc.
Many of the researchers, clinicians, presenters know each other and each others work.
 
Geoffrey Hallmann

Geoffrey Hallmann

Messages
31
Location
Lismore, NSW Australia
#IACFSMEConf

Fluge expanded upon his latest study. Feels that there is a metabolic obstruction in the central energy pathway that causes a profound lack of energy. He notes that the gene expressions indicate the PDK enzymes increase in both males and females - however there is a different compensation in women (something unsurprising - ie the differences). The 153 person study will look to wind up in late 2017. He also examined 20 standard amino acids and derivatives in 200 patients and 100 controls. Fluge referred to a variety of other studies of relevance from around the world.
 
G

Gijs

Senior Member
Messages
691
After reading all the posters I conclude few new significant discoveries. However, there is more evidence for subgroups. This is a good development. To summarize: very slow progress is going on in this disease. Fluge en Mella very much speculations, no hard evidence for their statements yet, which are tweeted by Cort. I think it is better for all patiënts not to expect to much from rituximab. I believe this is not the key for CVS/ME. I am very skeptical at this point. Sorry.
 
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