Development of an ME/CFS Online Screener
Round 1
Reviewer 1 Report
The manuscript is well-written and have a great contribution to the field. The development of the screener for ME/CFS based on the DSQ tools was hotly anticipated by the researchers and doctors who work with these patients all over the world!
1) The authors should complete the following sections:
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
2) Some suggestions for the authors to strengthen their manuscript are outlined in the "detail comments" section.
1) There is at least one more free online screener for ME/CFS ( https://invidis.ru/ ) developed by a group of researchers and medical doctors from the Laboratory of the Mosaics of Autoimmunity in Saint Petersburg State University who work on ME/CFS, fibromyalgia and post-COVID-19 condition together with the patient communities. The aim of the project is to create registries of the patients who suffer from these conditions all over the country (Russia). In order to provide screening for ME/CFS, fibromyalgia and post-COVID-19 condition several questionnaires are available for anyone through this web-site after registration. The main screener for ME/CFS (DSQ-SF) will become available in the personal account after the individual completes 1) a shorter screener which help to exclude over-working, life-long fatigue and non-severe fatigue (SF-36: Role Physical >=50, Social Functioning >= 62.5, Vitality >= 35); 2) MFI-20 questionnaire. As have been mentioned, DSQ-SF questionnaire uses Institute of Medicine (IOM), Fukuda and Canadian consensus criteria (CCC) case definitions. The individual who completes this questionnaire in the personal account is provided with the automatic conclusion if he/she meets one or more of the ME/CFS case definition. If the person is interested, what exactly case definitions he/she meets and what are the next steps regarding the diagnosis/treatment/taking part in research projects and in the patient register, he/she can approach the doctor through the e-mail/messaging services indicated on the website. Besides screening for ME/CFS, other questionnaires are available in the personal account (ACR 2016 and FiRST for fibromyalgia, PHQ9 and GAD7 for depression and anxiety, Post-COVID-19 Functional Status scale) without any charges.
The authors can include this screener in the Table 1.
2) Please, check https://www.medindia.net/patients/calculators/chronic-fatigue%02syndrome%02calculator.asp (the request URL is invalid.) Probably, the right link is https://www.medindia.net/patients/calculators/chronic-fatigue-syndrome-calculator.asp
3) Please, specify what were the requirements regarding the language abilities (reading and writing) for the samples 2,3,4,7.
4) Please, provide more data on the controls. Were they all healthy controls? Did the authors checked sensitivity and specificity with a control group of patients with major depression disorder or anxiety disorders? Individuals with MDD and anxiety disorders can also meet ME/CFS case definitions.
5) Why the authors preferred DSQ-1 to DSQ-2?
6) Line 266: “The specificity rose to 96% in this assessment” And what was the sensitivity?
7) Line 294, please, explain in some more detail what are the difference in the patients’experience of living with ME/CFS after “receiving a specialist referral and diagnosis”. It can increase the value of the tool which has been developed.
Author Response
Reviewer 1.
We very much appreciate this reviewer writing that “The manuscript is well-written and have a great contribution to the field. The development of the screener for ME/CFS based on the DSQ tools was hotly anticipated by the researchers and doctors who work with these patients all over the world!”
In the revised text, we have now completed the following sections: Author Contributions, Funding, Institutional Review Board Statement, Informed Consent Statement, Data Availability Statement, and Conflicts of Interest.
We have now added the free online screener for ME/CFS ( https://invidis.ru/ ) to our table.
We have now replaced the link as this url is invalid:https://www.medindia.net/patients/calculators/chronic-fatigue%02syndrome%02calculator.asp (the request URL is invalid.) The right link is https://www.medindia.net/patients/calculators/chronic-fatigue-syndrome-calculator.asp
Please, specify what were the requirements regarding the language abilities (reading and writing) for the samples 2,3,4,7. Unfortunately, we do not have data on this information, but we assume that the DSQ was translated appropriately for the adult audiences.
Most of the controls were healthy but not entirely, as they just did not have ME/CFS. The samples included sometimes family members and others that filled out questionnaires, and this type of detailed information is just not available. We have done work on sensitivity and specificity with a control group of patients with major depression disorder or anxiety disorders and have published this elsewhere, but we feel that is beyond the scope of this investigation.
We preferred DSQ-1 to DSQ-2 because it is briefer but certainly those that want to use the additional items can do so but not through our screen device.
We were asked about the sensitivity as we provide information on the specificity of 96%. We did provide accuracy data and an earlier draft had far more details on these issues, and we decided that most readers are less interested in these stats than the actual use of the screen, so we have downplayed stats for ease of reading among those with less sophisticated statistical backgrounds.
This reviewer asked us to explain in some more detail what are the difference in the patients’ experience of living with ME/CFS after “receiving a specialist referral and diagnosis”. We agree that it could increase the value of the tool which has been developed. Therefore, we added a couple of qualifying terms to expand on the benefits of a diagnosis and referral (ln 294): Patients have reported that receiving a specialist referral and diagnosis makes a meaningful, validating, quality-of-life improvement in their experience of living with ME/CFS (Broughton et al., 2017) [4] which our app aims to facilitate.
Reviewer 2 Report
This is a good addition to tools available.
I would strongly encourage not only expanding this, as you note, to Long COVID ( which sadly is not very useful set of diagnostic criteria being too inclusive. Like having "Electric car crash syndrome" that lumps together skull fractures with subdural hematomas, ankle sprains and bloody noses as one diagnostic category), but including more useful subcategory diagnoses (E.g.- Post viral CFS/Fibromyalgia, POTS, MCAS, Myocarditis, loss of smell, etc) so effective treatment is supported by the correct diagnoses
and
Including fibromyalgia diagnosis. The discussion should include why fibromyalgia, using perhaps the ACR research criteria , was not included
Author Response
We appreciate Reviewer 2 stating that “This is a good addition to tools available.”
This reviewer suggested that we expand this to Long COVID but we agree that the proposed criteria are not very useful set of diagnostic criteria as they are too inclusive. We also do not include the fibromyalgia diagnosis as this would involve a different set of items that goes beyond what we have taken on with our current screener.
Round 2
Reviewer 1 Report
All requests were satisfied.
All requests were satisfied.
