This is the second part of the RFI Poll Report. To see the Part 1, click here.
The Need for an Inclusive Model of Research
The inclusion of severe patients in research emerged as a theme in stakeholder comments. Severe patients will likely present with gross biological abnormalities, and therefore present a significant opportunity for discovery in ME research. Moreover, stakeholders stated that helping these patients was a moral imperative.
The comments on the #MEAction survey reveal that ME patients in general are eager to provide information to researchers, and excited to participate in research that might lead to treatments or greater understanding about the illness.
Direct involvement of patients in research and steering
Many stakeholders stated the importance of patients and patient advocates being involved in the process of policy decisions regarding ME, and guiding research.
Involvement of experienced ME researchers
Stakeholders also expressed the need to fund research carried out by experts in the disease and seek their help in guiding broader ME research questions, including epidemiologist Mady Hornig and virologist Ian Lipkin at Columbia University, geneticist Ron Davis and infectious disease specialist and cardiologist Jose Montoya at Stanford. Respondents rated the importance of the inclusion of biomedical experts in ME a 4.73 of 5 in terms of importance.
Multiple respondents wrote in to specifically ask the NIH to fund Ron Davis’s research into metabolomics in the illness. Now that Davis has discovered marked changes in cellular respiration in severe patients, he will be able to generate more specific hypotheses, but his small study had to be privately funded in order to get this far – unacceptable, given his passion, expertise, and ability to pull in experts from various disciplines to research this complex, multi-system illness.
“There are many people who would like to be involved in the actual physical research or have the technical data simplified so they can read and digest it easily. Many people with CFS/ME can understand the research and will be able to offer a more insightful view if they were more hands-on and able to participate in a more proactive way.”
“Remember that patient participation can be genuine or token – we don’t need the equivalent of greeenwashing, a token blessing on the design of studies by a tame and ill-informed group of patients. After being alternately ignored and denigrated for so long, patients are going to want real input.”
The need for an Institute
When asked where ME/CFS should be housed, 81.49% stated ‘in a new institute’ (n = 1529).
Stakeholder comments reveal that the most common perspective is that ME has theoretical access to funding from multiple institutions that translates to little funding from any institution.
Stakeholders found a high number of symptoms of ME worthy of study, with post-exertional malaise rated as most universally important.
While patients rate PEM as a high research priority, the ethical considerations of testing for and studying patients with PEM are considerable, as is reflected in stakeholders’ low rating of the desirability of performing second-day exercise testing (3.69, see part 3 of the RFI). First, overexerting ME patients places their health in danger. Second, the only patients capable of an exercise test are the healthiest of patients, skewing data.
ME patients were particularly disinterested in studying the relationship between ME and depression.
Pathogenic and non-pathogenic triggers
Respondents were primarily concerned with viruses, as reflected in the highest-rated responses being for research into EBV, herpesviruses, enteroviruses, and the gut microbiome. Non-pathogenic triggers rated generally lower for most respondents, with the average score for non-pathogenic triggers being 3.08/5, and pathogenic or immunologic triggers 3.79/5.
Many respondents stated that a single pathogen alone is unlikely to be the causative factor in ME.
“…It is known that this population often lives not only with a host of reactivated common viruses, but bacterial and all other pathogens are found in much higher numbers within ME/CFS than your average person. In the meantime there is obviously some fascinating research on the microbiome including that ME/CFS appear to suffer low diversity gut bugs. The question is obviously why we are susceptible to all manner of infection…?”
“Important studies, such as those in MS, have pointed to links between the gut microbiome and symptoms and this could be the same for people with ME/CSF…. Most important is developing a general pathogen screen profile that can help guide healthcare professionals into providing a wider array of tests than is generally done currently.”
“The question is more likely ‘what is wrong with the mitochondria or immune system of the patients that get ME’ as opposed to ‘what are the pathogens that cause ME’. Why do some people recover from the pathogen and move on, while others are never the same?”
Thank you again for your contributions to the RFI poll. We couldn’t have done it without you!