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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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HANSON, FLUGE AND MELLA JOIN OMF SAB!!!

perrier

Senior Member
Messages
1,254
First rate! But we need all the CFS researchers to come on board. The work at Charite in Berlin, the work in the uk, and in Australia....it's too scattered. They need to work together! Closely! Regularly! Dr Davis understands this more than anyone,and is generous with his findings.

This illness is not some casual little cold. It's devastating. It destroys a young person's life! It abuses a young person, for he or she has to resort to lying still in darkened rooms for YEARs, in some cases. Imagine what this does to the psyche. I watch this first hand. This is worse than house arrest,because in the latter the person can still do things! But I know so many who are chained to their beds.

I'm devastated that so many general doctors have simply not taken an interest in this.
Here where I live it's still under psychiatry!
 

Kati

Patient in training
Messages
5,497
I'm devastated that so many general doctors have simply not taken an interest in this.
Here where I live it's still under psychiatry!

We need a medical specialty. Family or general practitioners don't have the time, the ressource or the will to take on such a complicated disease. ANd then they don't run clinical trials. They don't do research.
 
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Jo Best

Senior Member
Messages
1,032
The researchers involved have been brought together, meeting, sharing, discussing, planning collaborations, over the years via the annual international Invest in ME Conference and Colloquium events. :hug: The slogan for the 2016 events seems applicable:
'Coming together is a beginning. Keeping together is progress. Working together is success.' (Henry Ford).
Absolutely agreed. If it wasn't for iime and OMF we would have literally no hope.
Amazing work and it does provide so much hope, a coordinated effort will find solutions much more quickly than individual groups.
First rate! But we need all the CFS researchers to come on board. The work at Charite in Berlin, the work in the uk, and in Australia....it's too scattered. They need to work together! Closely! Regularly! Dr Davis understands this more than anyone,and is generous with his findings.
They are all working together closely. They meet face to face every year in London for the Invest in ME Conference events, which now includes a 2-day closed workshop where they can freely discuss work in progress, and opportunities for informal discussions over the few days, and several initiatives come from this.

There were already strong cooperative links between UK and Australia, facilitating and co-funding translational biomedical research programmes via Invest in ME (Research) and the Alison Hunter Memorial Foundation.
Now there is the Open Medicine Foundation in USA and Solve ME/CFS, whose Ramsay Research Awards (from 2016) help fund direct collaborations between researchers working in different countries. Dr Nahle also assembled the London Med Ed Working Group, one of the initiatives to spring from the 2016 Invest in ME Conference events.

Joint working between the European reseachers is facilitated by the formation in 2015 of the European ME Research Group (EMERG), instigated by UK charity Invest in ME Research as a project of the European ME Alliance.

This is all in the face of a strong psychiatric/biopsychosocial lobby in most (maybe all) of those countries and the location in Westminster of the annual London meeting of the world's leading researchers invites political support for the progress which has been instigated and largely funded by the patient/parent/carer community.
 

perrier

Senior Member
Messages
1,254
They are all working together closely. They meet face to face every year in London for the Invest in ME Conference events, which now includes a 2-day closed workshop where they can freely discuss work in progress, and opportunities for informal discussions over the few days, and several initiatives come from this.

There were already strong cooperative links between UK and Australia, facilitating and co-funding translational biomedical research programmes via Invest in ME (Research) and the Alison Hunter Memorial Foundation.
Now there is the Open Medicine Foundation in USA and Solve ME/CFS, whose Ramsay Research Awards (from 2016) help fund direct collaborations between researchers working in different countries. Dr Nahle also assembled the London Med Ed Working Group, one of the initiatives to spring from the 2016 Invest in ME Conference events.

Joint working between the European reseachers is facilitated by the formation in 2015 of the European ME Research Group (EMERG), instigated by UK charity Invest in ME Research as a project of the European ME Alliance.

This is all in the face of a strong psychiatric/biopsychosocial lobby in most (maybe all) of those countries and the location in Westminster of the annual London meeting of the world's leading researchers invites political support for the progress which has been instigated and largely funded by the patient/parent/carer community.
When I recall the AIDS model, it's clear this is not enough.
 

perrier

Senior Member
Messages
1,254
These days there are also internet communications, Skype etc, which weren't so available in early AIDS days.
Which means things ought to move faster. But because AIDS was global and carried a death sentence, folks moved on it,and the virus was also identified. But ME is also global, and the etiology is NOT thus far identified. Nevertheless, the way in which it destroys young people means it should be gripping attention, but it doesn't adequately. The stupid Fatigue word has done huge damage. This isn't about fatigue,this is about symptoms so extreme the person can't do anything but lie down.
 

Jo Best

Senior Member
Messages
1,032
When I recall the AIDS model, it's clear this is not enough
Which means things ought to move faster. But because AIDS was global and carried a death sentence, folks moved on it,and the virus was also identified. But ME is also global, and the etiology is NOT thus far identified. Nevertheless, the way in which it destroys young people means it should be gripping attention, but it doesn't adequately. The stupid Fatigue word has done huge damage. This isn't about fatigue,this is about symptoms so extreme the person can't do anything but lie down.

I'm sure all these researchers would agree with you. I was responding to your point about them working closely together, but this work is largely self-motivated, or driven and funded by patients/parents/carers, so there is a sense of urgency among these particular researchers themselves, as well as great determination and dedication to the task, but just imagine what more they could do or how much faster with the political will and funding given to AIDS.

As Dr Nancy Klimas said in 2009, “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families."



 
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perrier

Senior Member
Messages
1,254
I'm sure all these researchers would agree with you. I was responding to your point about them working closely together, but this work is largely self-motivated, or driven and funded by patients/parents/carers, so there is a sense of urgency among these particular researchers themselves, as well as great determination and dedication to the task, but just imagine what more they could do or how much faster with the political will and funding given to AIDS.

As Dr Nancy Klimas said in 2009, “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families."


Yes your point is well taken, and Dr Klimas said this in 2009. It's now 2017. Young people suffer and languish and slowly grow old, alas, in great pain. When will more of the medical establishment take an interest?
 
Messages
66
This piece written by Laurie McGinley for The Washington Post, which has just popped up on my news feed, is inspirational, and the kind of revolution in medical thinking and research I think and hope may happen as a result of this OMF collaboration and it's policy of sharing open data.

It's about an experimental gene targeting immunotherapy being trialled at John Hopkins University that is currently giving hope to cancer patients:
https://www.washingtonpost.com/nati...18f6849a004_story.html?utm_term=.6010ae871f46

Point being that more collaboration and sharing will hopefully inspire and put an end to medically unexplained.
 
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