ME Association: Website survey: What do you think should be our research funding priorities for 2018?

Andy

Andy

Retired committee member
To go straight to the survey, it's on the MEA home page, http://www.meassociation.org.uk/, towards the bottom of the page, middle column.

Options are:
  • UK M.E. Biobank
  • Role of infection
  • Immune system dysfunction
  • Mitochondrial function
  • Neurological involvement e.g. inflammation, PoTS, and nervous system
  • Metabolomic research
  • Microbiome research
  • Sleep research
  • Activity management incl. Pacing
  • Drug treatments aimed at symptom relief
  • Other - please let us know!
Personally, I hope that the BioBank get a lot of votes, well characterised samples are extremely important and use of their samples can really reduce the cost of research.

The ME Association has always regarded funding biomedical research – into the underlying physical cause of ME/CFS, diagnostic biomarkers, effective forms of treatment – as a key priority for the charity.

We therefore established the MEA Ramsay Research Fund – where all money donated or raised for research goes direct to research activity. There are no salaries or administrative costs to pay – such costs are all met from the charity’s general funds.

Research projects and research infrastructure that the MEA Ramsay Research Fund is currently funding, or has been funding, includes:
  1. The ME Biobank, which is part of the University College London Biobank at the Royal Free Hospital in London. Trustees have recently agreed to continue to fund all the basic running costs of the ME Biobank in 2018 and 2019. Additional information on the ME Biobank can be found on their website.
  2. Post-mortem tissue research at Addenbrooke’s Hospital in Cambridge.
  3. MicroRNA profile and biomarker research involving blood samples that have been collected from people with severe ME/CFS that come from the ME Biobank.
  4. Metabolomic research with Dr Karl Morten at the University of Oxford.
  5. Mitochondrial and muscle function research at the Universities of Liverpool, Oxford and Newcastle.
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http://www.meassociation.org.uk/201...-funding-priorities-for-2018-04-january-2018/

ETA: Options available and plug for the Biobank.
 
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I'm currently less inclined to respond to this survey and more inclined to request Charles Shepherds participation back on the online forums regarding the numerous developments there have been around the Tuller blogs, the BMJ and COPE issue and the ongoing damage Crawley is doing with her deluded behaviours. Especially considering BACME has this week openly declared they want to merge with the CMRC and the ME Association is in the CMRC and Holgate seems to be on another planet when it comes to addressing the disaster that is Esther Crawley.
 
large donner said:
I'm currently less inclined to respond to this survey and more inclined to request Charles Shepherds participation back on the online forums regarding the numerous developments there have been around the Tuller blogs, the BMJ and COPE issue and the ongoing damage Crawley is doing with her deluded behaviours. Especially considering BACME has this week openly declared they want to merge with the CMRC and the ME Association is in the CMRC and Holgate seems to be on another planet when it comes to addressing the disaster that is Esther Crawley.
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I don't see this as either/or. Surely it's a good thing that the MEA supports biomedical research and involves members in decision making on this. I appreciate being given the opportunity to vote.

We should remember that Charles Shepherd has ME himself, has been doing a lot of speaking at Unrest events and other excellent work on our behalf as a volunteer.

Of course I'd like to see Charles joining this forum and becoming involved in many of the discussions. But that is up to him.

I completely agree with you that the MEA should withdraw from the CMRC and have written to the MEA board to say so, explaining why. I hope, if you are a member of the MEA, that you have done so too.
 
Well the issue with biobank was as Davis says, if the blood is collected wrong then all studies are screwed!!! So not sure we know enough as to how to collect the blood properly at this point.
The other for studies stuff look ok.
I would love to see some family incidence studies ( wouldn’t cost much to add questionare to the patients pass by)
 
I voted "Drug treatments aimed at symptom relief" because this is what we all want, a treatment or cure.
That said i don't understand how money spent on it will lead to them. What is their plan if this option is what they pursue (though it has a low number of votes).
 
Seven said:
Well the issue with biobank was as Davis says, if the blood is collected wrong then all studies are screwed!!! So not sure we know enough as to how to collect the blood properly at this point.
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So using that argument, we shouldn't trust any study that studies patients blood as nobody knows how to collect it properly.....
 
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Seven said:
Well the issue with biobank was as Davis says, if the blood is collected wrong then all studies are screwed!!! So not sure we know enough as to how to collect the blood properly at this point.
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This is not the situaiton. The Biobank samples are collected and stored using the most reliable methods available to lab research, which are fine for most studies. Moreover, the Biobank people are in discussion with groups who have made careful analysis of suitability of these storage methods for more specialised assays (including Prof Blanco in Spain who has published on this, and also Dr Hornig). Dr Davis was probably referring to specialised forms of analysis which may require different preparation of samples such as RNA content. Nobody is going to use Biobank samples for studies of that sort if we know they are unsuitable. For things like antibody tests and DNA analysis the samples are absolutely fine.
 
Current vote levels

  • UK M.E. Biobank (13%, 72 Votes)
  • Role of infection (5%, 26 Votes)
  • Immune system dysfunction (17%, 94 Votes)
  • Mitochondrial function (18%, 101 Votes)
  • Neurological involvement e.g. inflammation, PoTS, and nervous system (18%, 102 Votes)
  • Metabolomic research (10%, 54 Votes)
  • Microbiome research (6%, 33 Votes)
  • Sleep research (4%, 20 Votes)
  • Activity management incl. Pacing (2%, 10 Votes)
  • Drug treatments aimed at symptom relief (6%, 36 Votes)
  • Other - please let us know! (2%, 10 Votes)
 
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