NIH Pathways report

[Peter-J]

A heads up report of the 2014 NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, The panel's final report will appear in print in the Annals of Internal Medicine and will be posted online on the ODP website on Tuesday, June 16, 2015

prevention.nih.gov/programs...

[Seascape]

Watching this space Peter-J

[Ian123]

Live in hope that the report is worth waiting for.

[Arianne]

Next week

[budgiefriend]

will be on the edge of my seat waiting to see it. ...... but look at the infographic by clicking the infographic link on that article. It is calling ME a 'disorder' rather than a disease. That does not bode well nor does it set well with me. IOM report called it a multi-system disease. Now are they trying to pacify both psychiatrists and 'proper' researchers and expert clinicians?

[budgiefriend]

I just scanned over the Evidence Report on Diagnosis and Treatment (pdf from a link on that article you linked to)... Sadly, I was not impressed.

[RockRose]

I feel an encouraging move towards multi-disciplinary, concerted research, including the voice of those experiencing the condition...and a real URGE to get from 'bench to bedside' to improve well-being of lives (...all this from briefly scanning the draft report).

Who knows how long this takes, yet I feel heartened so far, wonder what others think- feels like good news at first glance

V. brief extract:

"An integrated, systems-level approach should be followed to understand how immunologic, neurologic, and metagenomic factors may contribute to ME/CFS. Immunologic mechanisms of ME/CFS and pathways associatedwith disease progression must be defined and characterized (e.g., defining cytokine profiles involved in pathogenesis; studying inflammation; and comprehending the basis for natural killer cell dysfunction observed in many patients with ME/CFS).

These also should be longitudinal studies to explore the possibility of a progressive immune exhaustion or dysfunction in ME/CFS.'

Plus lots more !

You go, NIH!

[SophiaG in reply to RockRose]

Heartened also of good news.

[Peter-J]

Final Report prevention.nih.gov/docs/pro...

[Halflife in reply to Peter-J]

Annals Internal Medicine annals.org/article.aspx?art...

Funding how too recommendations challenge the NIH.

[Seascape in reply to Peter-J]

More than I can take in quickly and thanks. I'll come back once some has registered in my conciousness.

[Ian123 in reply to Peter-J]

Considering how funding can be brought in line with other neurological conditions with a similar disabling burden must change the research that can be carried out.

What happens next ?

[ringading]

" In particular, continuing to use the Oxford definition may impair progress and cause harm. Therefore, for progress to occur, we recommend that this definition be retired; the ME/CFS community concur on a single case definition (even if it is not perfect); and patients, clinicians, and researchers agree on a definition for meaningful recovery"

All research using Oxford Criteria impairs progress and causes harm.

[Ian123 in reply to ringading]

Methods from PACE thelancet.com/journals/lanc...

"In our parallel-group randomised trial, patients meeting Oxford criteria for chronic fatigue syndrome"

Retire £5m of UK government sponsored research, have my doubts on that happening ringading no matter how appealing the prospect is.

[ringading in reply to Ian123]

Exactly ! plus NICE Guidelines on same criteria.

[Ian123 in reply to ringading]

Prioritize tasks then break them into amounts within the energy envelope, this will not be the first time that evidence that did not accord with medical politics has been ignored.

[Stiller in reply to ringading]

Definition retired should have been long since meagenda.wordpress.com/2009...

[Arianne]

Both society and the medical profession have contributed to the disrespect and rejection experienced by patients with ME/CFS. They are often treated with scepticism, uncertainty, and apprehension and labelled as de conditioned or having a primary psychological disorder. Patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms; some are treated inappropriately, causing additional harm. Overall, the debilitating effects can cause financial instability due to the consequences of the illness

Chimes with UK experience couldn't have been written here could they influence an international medical mindset.

[Stormchaser]

P2P Final Chapter occupycfs.com/

[Alba1 in reply to Stormchaser]

Anthony L. Komaroff Overview one document today.

[Ian123 in reply to Alba1]

Dr Komaroff shows the P2P as an IOM lite using more of the material from the IOM report.

NIH funding and where it should be appear the strongest elements of P2P final report.

[Arianne in reply to Stormchaser]

Thanks for share Stormchaser.

[Peter-J]

Making the hard yards orwh.od.nih.gov/research/me...

[Ian123]

Solve ME/CFS Initiative review solvecfs.org/pathways_to_pr...

[Stormchaser in reply to Ian123]

Suspected a bad report 3 years for worthless spend of tax dollars.