Ignore the black swan at your members peril. #MSBlog #MSResearch
"I received the email below from the MS Society. You may find the research priorities interesting, or not! My one criticism is the priorities make no mention of cause or causation; the whole exercise seems to have be done within the current paradigm or "autoimmune dogma". This will make it hard for the Charcot Project to get any support from the MS Society. These research priorities do not acknowledge, or make any allowances for, a black swan."
"I am interested in finding out if the methodology the James Lind Alliance partnership uses takes into account black swan events or is it blinkered by consensus dogma? Black swan events are more common than we realise, and rarely if ever emerge from a consensus."
Dear researchers
"I received the email below from the MS Society. You may find the research priorities interesting, or not! My one criticism is the priorities make no mention of cause or causation; the whole exercise seems to have be done within the current paradigm or "autoimmune dogma". This will make it hard for the Charcot Project to get any support from the MS Society. These research priorities do not acknowledge, or make any allowances for, a black swan."
"I am interested in finding out if the methodology the James Lind Alliance partnership uses takes into account black swan events or is it blinkered by consensus dogma? Black swan events are more common than we realise, and rarely if ever emerge from a consensus."
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| It is very hard to see a black swan from this perspective! |
Dear researchers
Key MS research priorities
In collaboration with several organisations, the MS Society has recently completed a James Lind Alliance partnership to set priorities for MS research important to people affected by MS and healthcare professionals:
- Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS?
- How can MS be prevented?
- Which treatments are effective for fatigue in people with MS?
- How can people with MS be best supported to self-manage their condition?
- Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS?
- Is Vitamin D supplementation an effective disease modifying treatment for MS?
- Which treatments are effective to improve mobility for people with MS?
- Which treatments are effective to improve cognition in people with MS?
- Which treatments are effective for pain in people with MS?
- Is physiotherapy effective in reducing disability in people with MS?
The JLA have an established process of bringing together healthcare professionals and people affected by health conditions to jointly agree research priorities for a particular health condition. Some of you would have been involved in this process, and we are delighted to announce these results.
With 669 people affected by MS and health care professionals feeding into this process from the beginning we can be confident that this list of unanswered questions truly reflects the priorities of the MS community.
The MS Society is now working to identify how we will support research to address these priorities. This may be through our own funding mechanisms, or through encouraging other funders to support and adopt these priorities. We will be in touch with more information on our strategies to address these priorities once they are finalised.
These priorities will complement our existing research strategy, and applications to future grant rounds that specifically address these priorities will be considered more favourably. However we do not intend to exclusively restrict our funding to these priorities, and will continue to support research into the causes of MS, and all aspects of treatment and care for people affected by MS.
Previous partnerships using this process in other conditions have a track record of turning priorities into research projects by securing funding through other organisations. This is really encouraging news and we will be working to make this happen with these new priorities.
You can find out more information on our partnership here: www.mssociety.org.uk/jla.
Best wishes,
MS SocietySwitchboard: 020 8438 0700
