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Prof Jonathan Edwards & patients' journal editorial: ME/CFS is a solvable biological problem

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598

Hey...I recognize those names !

A big thank you to @Jonathan Edwards ,@Simon and @Marco for a great editorial.

excerpt:
The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is comparable to multiple sclerosis, diabetes or rheumatoid arthritis in prevalence (∼0.2% to 1%), long-term disability, and quality of life,[1–5] yet the scale of biomedical research and funding has been pitifully limited, as the recent National Institutes of Health (NIH) and Institute of Medicine reports highlight.[6,7] Recently in the USA, NIH Director Francis Collins has stated that the NIH will be ramping up its efforts and levels of funding for ME/CFS,[8] which we hope will greatly increase the interest in, and resources for researching this illness. Despite scant funding to date, researchers in the field have generated promising leads that throw light on this previously baffling illness. We suggest the key elements of a concerted research programme and call on the wider biomedical research community to actively target this condition...
 
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Simon

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The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem
- Fatigue: Biomedicine, Health & Behavior - Volume 4, Issue 2
Open access
Jonathan C.W. Edwardsa, Simon McGrath, Adrian Baldwin, Mark Livingstone & Andrew Kewley

Wow, didn't expect to see that for a while.
Thanks especially to @Jonathan Edwards for being so willing to collaborate on a paper with mere patients; a lot of researchers would not dream of doing so.

Thanks to @Marco, and the other co-authors too.

We felt it was time to make the case for biomed research, aiming to summarise the most promising research, while acknowledging its limitations. And we hope it will encourage just a few new researchers into the field.
 
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Simon

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Thank too to Phoenix rising. We would never have met without PR, we wrote the paper using a private forum for discussion, and other PR members played key roles too (it wouldn't have happened without @Scarecrow for one)

We live in three different countries and have still never met, but it shows what can be accomplished when patients are give the tools (PR, the main forum, a private sub-forum for discussion), and a researcher - @Jonathan Edwards is willing to judge patients by what they can contribute, not who they are.

Huge thanks to @Mark and @Kina
 
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Simon

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So the paper summarises the most interesting studies (inc 2-day exercise challenge, changes in gene expression after moderate exercise, PET scan indicating microglia activation), sets out some possible general models, and proposes some important practicalities inc better infrastructure/cohorts, stress-testing, replication, exploring immunological, autonmic and CNS factors). then concludes

Conclusion

In summary, much more biomedical research into ME/CFS is urgently needed to provide hope for improved treatment. Nobody can claim to know at what level the key disorder of physiology occurs, although various levels of brain function appear to be involved. There may be several etiological subgroups, which may require different management. Prognosis is poor and the impact of current care is limited. We now need a more concerted effort for ME/CFS.
 

A.B.

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One thing that I think is missing from the list of practicalities is the importance of tracking symptoms and repeatedly measuring the same things over a longer period of time. Knowing what distinguishes good from bad days/weeks/months seems pretty important.

It's also theoretically possible to miss important abnormalities by not measuring things over time. If all patients undergo fluctuations in symptoms, the abnormality across the patient sample may simple average out to normal levels.
 
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Marky90

Science breeds knowledge, opinion breeds ignorance
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Wow you guys, this is one of the best papers I have read. Especially I felt your sections "potential models" and "practicalities", brought some thoughts on the table that haven`t touched the paper much before. I will mail it around to some hospitals, politicians and so on :thumbsup:
 

Simon

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Monmouth, UK
Wow you guys, this is one of the best papers I have read. Especially I felt your sections "potential models" and "practicalities", brought some thoughts on the table that haven`t touched the paper much before. I will mail it around to some hospitals, politicians and so on :thumbsup:

I am very impressed about this. I stole some of your ideas and sent them to the Research Council of Norway to suggest ME/CFS studies that the council should prioritise.
Thanks both.

The aim of the paper is to provide a 'way in' to biological mecfs research for researchers who might be interested but were overwhelmed by the vast literature of mainly unconfirmed findings, or those who doubted there was anything of merit in biological research.

The paper doesn't have firm conclusions about mechanisms - that's the point, we need more and better research to find out. The idea is that highlighting the most promising research, some potential mechanisms and some ways forward will give prospective researchers a handle on the field. All that's needed now is for a whole load of researchers in relevant fields to read the paper. It's open access to make it as widely accessible as possible.