BMJ Opinion: Amy Price: Patients doing research for themselves, 2014

[Andy]

Patient rights and empowerment movements have grown exponentially over the last decade. Shared data movements and clinical decision making may employ slogans like “having a voice,” “nothing about me, without me,” and “give me my damn data,” all these expressions share the language of loss and blame. Vision and partnership are not built by crying for what we do not have, but instead by realistically assessing the situation as it is and working to build collectively what we have. (Price, Biswas & Biswas, 2013)

Some patients have done just that. In a recent BBC programme, Vivienne Parry interviewed those who have dared to engage in patient led research, and who have subsequently challenged and enriched the medical establishment.

https://blogs.bmj.com/bmj/2014/10/17/amy-price-patients-doing-research-for-themselves/

 

[ladycatlover]

John Holter was a toolmaker whose son contracted meningitis and “water on the brain.” Relieving the pressure protects the brain, however, a valve to control the direction and flow of the cranial pressure was needed. The silicon valve perfected by Holter was too late to save his own son’s life, but has since helped millions of others.

That is just so incredibly sad for the inventor.

 

[Ravn]

Interesting article. I do like the idea of patient involvement in research - provided it's meaningful, not just cosmetic image-polishing. As @Trish said in another thread there's a risk of only patients being selected who are likely to 'approve' of the research in question, rather than ask critical questions.

I clicked on some of the links in the article.
1/ The idea of patients as peer reviewers is intriguing, has anything worthwhile come from it?
https://www.bmj.com/content/348/bmj.g3726/rr/702064
2/ Has anyone read the book Let Patients Help, linked in the article? Worth the effort? Amazon product ASIN 14663064913/ Is anybody here on Patients Like Me (https://www.patientslikeme.com)? Is it useful?
They say that on that forum

15260 patients have this condition

• 49 new patients joined this month
• 4015 say ME/CFS is their primary condition

Not sure what to make of the discrepancy between 15260 having the condition and 4015 having it as their primary condition. Sounds like there could be some major diagnostic confusion in the mix, probably not helped by their description of ME/CFS:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome which may also be known as Systemic exertion intolerance disease is characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer.

ETA: Sorry about that large white space, can't get this post to format correctly for some reason.

 

[Andy]

I decided to be the sacrificial sign-up

Sign-up T&Cs note that you agree

My de-identified data may be shared or sold for research, but identified data will never be used that way without my consent.

And this is from when you complete your initial profile

Type of ME/CFS (check all that apply)

• Chronic fatigue immune dysfunction syndrome (CFIDS)
• Chronic fatigue syndrome (CFS)
  
• Myalgic encephalomyelitis (ME)
• Neuroendocrine immune disorder
• Post-viral fatigue syndrome (PVFS)
  
• Systemic exertion intolerance disease (SEID)
  
• I'm not sure

Do you have any of these health issues that can occur with myalgic encephalomyelitis/chronic fatigue syndrome?

• Sjogren's syndrome
• fibromyalgia
• irritable bowel syndrome
• migraine
• myofascial pain syndrome

Things you've tried for your myalgic encephalomyelitis/chronic fatigue syndrome: (Check all that apply)
Amitriptyline (Elavil, Endep, Trepiline…)
Duloxetine (Cymbalta, Cymgen, Yentreve…)
Duloxetine (Cymbalta, Cymgen, Yentreve…)
Pregabalin (Lyrica, Maxgalin, pregabalin CR…)
No, I have not ever taken any of these

And any other treatment that you have taken

Their "Fibromyalgia and ME/CFS" forum is quiet, the first page of threads goes back 3 weeks, and most of them are of the personal "just been diagnosed" kind.

 

[Andy]

ETA: Sorry about that large white space, can't get this post to format correctly for some reason.

The forum software is automatically processing the Amazon link into the little picture/button, probably easiest to put in on a separate line, that way it won't throw the rest of your formatting out.
And your link to patientslikeme has included the ")/?" in it, it actually links to (I've added spaces deliberately) https: //www. patientslikeme.com)/?, unless you are hiding a long URL for ease of reading, best normally to just let the forum software handle it, i.e. https://www.patientslikeme.com