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Consulting patients in setting priorities in M.E. research: findings from a national on-line survey

Dolphin

Senior Member
Messages
17,567
Free full text: http://www.researchinvolvement.com/content/1/1/11

Research article
Consulting patients in setting priorities in Myalgic Encephalomyelitis (M.E.) research: findings from a national on-line survey
Nicola Childs1, Lisa Robinson1, Sonya Chowdhury2, Clare Ogden2 and Julia L. Newton13*

Author Affiliations

1Clinical Academic Office, The Medical School, Newcastle University, Newcastle, UK

2Action for M.E, 42 Temple Street, Keynsham BS31 1EH, UK

3Fatigue CRESTA Clinic, Newcastle Hospitals NHS Foundation Trust, Newcastle, UK

Email: Nicola Childs nicola.childs@ncl.ac.uk - Lisa Robinson lisa.robinson@ncl.ac.uk - Sonya Chowdhury sonya@actionforme.org - Clare Ogden clare@actionforme.org - Julia L Newtonjulia.newton@ncl.ac.uk

Research Involvement and Engagement 2015, 1:11 doi:10.1186/s40900-015-0011-x

Received: 4 March 2015
Accepted: 8 September 2015
Published: 28 September 2015


Plain english summary

Myalgic encephalitis (M.E.) is a common condition, the cause of which is not known and there are no treatments available.

In this study the national patient support group Action for M.E. sought the opinions of their members via an online survey as to what they felt should be future priorities for M.E. research.

Respondents were asked what they considered first, second and third research priorities to be from a list of 13 pre-defined options.

Individuals were invited to provide additional free text comments about Action for M.E.’s research priorities in general.

Of the 1144 respondents: 822 had M.E.; 94 were a supporting a member of Action for M.E. ; 66 were carers for someone with M.E.; 26 were professionals with an interest in M.E.; 136 had a family member or colleague with M.E.

Individuals selected more than one category as applicable.

The top five research priorities identified were:
disease processes to achieve a better understanding of the causes of M.E.;
more effective treatments;
faster and more accurate diagnosis;
clinical course of M.E.; outcomes and natural history;
and severely affected patients.

Least popular priorities were:
sleep;
economic research towards identifying the cost of ME;
and psychological aspects.

Much of the free text comments emphasised the importance of funding biomedical research into disease processes to achieve a better understanding of the causes of M.E.

Three themes were identified in relation to this topic: accurate diagnosis and awareness; risk factors and causes; drug development and curative therapies.

In conclusion; individuals affected by M.E. have clear views regarding priorities for research investment.

These have informed Action for M.E.’s ongoing research strategy and ultimately will inform national and international research priorities.

----

Abstract

Background

The aim of this work was to involve patients in setting future priorities for myalgic encephalomyelitis (M.E.) research.

Methods

A national on-line survey was developed collecting structured and unstructured data.

Respondents were asked what they considered Action for M.E.’s first, second and third research priorities to be from a list of 13 pre-defined options.

Individuals were also invited to provide any additional free text comments about Action for M.E.’s research priorities in general.

A total of 1144 individuals completed the on-line survey.

Respondents were asked to indicate if: they had M.E. (n = 822; 90.4 %); were a supporting a member of Action for M.E. (n = 94; 10.3 %); carer for someone with M.E. (n = 66;7.3 %), professional with an interest in M.E. (n = 26;2.9 %); or had a family member or colleague with M.E. (n = 136;15 %).

Individuals were able to select more than one category as applicable.

Results

The top five research priorities identified by the respondents were:
disease processes to achieve a better understanding of the underlying pathology of M.E.;
more effective treatments;
faster and more accurate diagnosis;
clinical course of M.E.; outcomes and prognosis;
and severely affected patients.

The lower research priorities identified were: sleep; economic research towards identifying the cost of ME for individuals and society; and psychological aspects.

Much of the unstructured data provided by respondents emphasised the importance of funding biomedical research into disease processes to achieve a better understanding of the underlying pathology of M.E.

Three themes were identified in relation to this topic: accurate diagnosis and awareness; risk factors and causes; drug development and curative therapies.

Conclusions

Individuals affected by M.E. have clear views regarding the most important priorities for research investment.

These tended to focus on disease processes to achieve a better understanding of the underlying pathology of M.E. and have been used to inform Action for M.E.’s ongoing research strategy.
 

Dolphin

Senior Member
Messages
17,567
The data is given in a figure but that doesn't given the numbers unlike the data at:
http://www.actionforme.org.uk/Resou...search/research-priorities-survey-results.pdf

Childs 2015 data.png
 

Dolphin

Senior Member
Messages
17,567
A sample contribution given in the paper:
“Action for M.E.’s research priorities need to be focused on proper biomedical research and should not be allowed to drift back to funding research linked to the biopsychosocial model proposed by certain UK psychiatrists. This is a dead-end and total waste of precious research funds”
 
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Dolphin

Senior Member
Messages
17,567
A total of 1144 individuals completed the on-line survey.

Respondents were asked to indicate if: they had M.E. (n = 822; 90.4 %); were a supporting a member of Action for M.E. (n = 94; 10.3 %); carer for someone with M.E. (n = 66;7.3 %), professional with an interest in M.E. (n = 26;2.9 %); or had a family member or colleague with M.E. (n = 136;15 %).
These figures don't add up i.e. 90.4% of 1144 is not 822.
The first draft online talks about 915 participants. The figures suggest 909/910. People could tick more than one box which is why summing up all the categories could give more than 909/910/915.

Adding the figures at: http://www.actionforme.org.uk/Resou...search/research-priorities-survey-results.pdf I got 904 1st choices, 893 2nd choices and 898 3rd choices.
 
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Dolphin

Senior Member
Messages
17,567
It's interesting to compare this with the MRC research strategy 2003. I can't remember the exact details but it basically concluded that funding the pathophysiology and aetiology wasn't necessary, you could have treatments without knowing the underlying cause for a condition. This was clearer in the draft research strategy that had been released a few months before. By the time of the final version, they changed the wording of the bits but not the general direction (they held a consultation but seemed to largely ignore the results except to make cosmetic changes).

Two weeks after the research strategy was published, it was announced that the FINE and PACE Trials would be funded. It wouldn't be till 2011 that the MRC would fund biomedical research.

It seems quite likely the strategy was written the way it was to justify the MRC's funding of the FINE Trial and PACE Trial.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I agree with the top research priorities identified by the survey...

1. Disease processes (to achieve a better understanding of the underlying pathology of ME).
2. More effective treatments.
3. Faster and more accurate diagnosis.
4. Clinical course of ME; outcomes and prognosis.
5. Severely affected patients.
 
Messages
13,774
It's interesting to compare this with the MRC research strategy 2003. I can't remember the exact details but it basically concluded that funding the pathophysiology and aetiology wasn't necessary, you could have treatments without knowing the underlying cause for a condition. This was clearer in the draft research strategy that had been released a few months before. By the time of the final version, they changed the wording of the bits but not the general direction (they held a consultation but seemed to largely ignore the results except to make cosmetic changes).

Two weeks after the research strategy was published, it was announced that the FINE and PACE Trials would be funded. It wouldn't be till 2011 that the MRC would fund biomedical research.

It seems quite likely the strategy was written the way it was to justify the MRC's funding of the FINE Trial and PACE Trial.

That whole approach has left me not wanting research into treatments... I fear it!
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
It's interesting to compare this with the MRC research strategy 2003. I can't remember the exact details but it basically concluded that funding the pathophysiology and aetiology wasn't necessary, you could have treatments without knowing the underlying cause for a condition. This was clearer in the draft research strategy that had been released a few months before. By the time of the final version, they changed the wording of the bits but not the general direction (they held a consultation but seemed to largely ignore the results except to make cosmetic changes).

Two weeks after the research strategy was published, it was announced that the FINE and PACE Trials would be funded. It wouldn't be till 2011 that the MRC would fund biomedical research.

It seems quite likely the strategy was written the way it was to justify the MRC's funding of the FINE Trial and PACE Trial.

That whole approach has left me not wanting research into treatments... I fear it!
Yes, I think I didn't vote for treatments in this survey for that reason.

I also would feel more comfortable trying a treatment if it has some logical basis.