On 2014 Jan 16, Tom Kindlon commented:

Knudsen and colleagues raise an interesting issue. However, I believe they could have helped ensure better matching by using other groups of patients with chronic illnesses such as multiple sclerosis which, as the authors highlighted, had previously been found to have higher online activity than Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Perhaps in time the field will develop and statistical tools like regression could help isolate which independent variables predict online activity, and hence help isolate communities with unusual patterns.

It would have been interesting if the authors had gathered qualitative information on the topics discussed, to see if there were differences not just in the quantity of activity but also in terms of the range of topics discussed, and how they were discussed in different groups. ME/CFS is often said to be a heterogeneous condition (1); similarly in my experience, users of ME/CFS online forums are not all the same in terms of their interests (what they like to discuss or read about). This can be seen in the different types of groups that show up in a search of www.yahoogroups.com, for example: there are chat groups; groups interested in experimental therapies; groups interested in activism of one sort or another; groups interested in discussing research findings, etc.

The authors suggest that the high level of activity in ME/CFS could be explained by action proneness (2). However that study was retrospective and thus could be affected by recall bias. Research that utilised an "action proneness" questionnaire, when individuals were actually ill with ME/CFS, found lower levels compared to the general population (1).

The paper also mentions the "boom-bust" theory with regard to activity levels in ME/CFS. However, there is evidence that activity levels in ME/CFS patients don't fluctuate any more than control groups (3,4).

We are told that "research on support group participation for CFS/ME sufferers indicates that active members report greater symptom severity and less improvement of the disorder than inactive members (5)". However the study, which also involved fibromyalgia, found that employment rates, an important measure of overall functioning was not statistically different between the two groups.

If there are particular issues in ME/CFS that are driving patients to internet forums, perhaps in time they will improve e.g. the stigmatisation mentioned. Also, more effective therapies for ME/CFS may become available - currently there are no FDA approved drugs for the condition, which can lead patients to be interested in numerous speculative therapies.

References:

(1) Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111 http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx (last accessed: January 4, 2013)

(2) Van Houdenhove B, Onghena P, Neerinckx E, Hellin J. Does high 'action-proneness' make people more vulnerable to chronic fatigue syndrome? A controlled psychometric study. J Psychosom Res. 1995 Jul;39(5):633-40.

(3) Meeus M, van Eupen I, van Baarle E, et al. Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study. Arch Phys Med Rehabil. 2011 Nov;92(11):1820-6.

(4) van der Werf SP, Prins JB, Vercoulen JH, van der Meer JW, Bleijenberg G. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res. 2000 Nov;49(5):373 -9.

(5) Friedberg F, Leung DW, Quick J. Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members. J Rheumatol 2005;32:2416-20

Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid.

On 2014 Jan 16, Tom Kindlon commented:

Knudsen and colleagues raise an interesting issue. However, I believe they could have helped ensure better matching by using other groups of patients with chronic illnesses such as multiple sclerosis which, as the authors highlighted, had previously been found to have higher online activity than Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Perhaps in time the field will develop and statistical tools like regression could help isolate which independent variables predict online activity, and hence help isolate communities with unusual patterns.

It would have been interesting if the authors had gathered qualitative information on the topics discussed, to see if there were differences not just in the quantity of activity but also in terms of the range of topics discussed, and how they were discussed in different groups. ME/CFS is often said to be a heterogeneous condition (1); similarly in my experience, users of ME/CFS online forums are not all the same in terms of their interests (what they like to discuss or read about). This can be seen in the different types of groups that show up in a search of www.yahoogroups.com, for example: there are chat groups; groups interested in experimental therapies; groups interested in activism of one sort or another; groups interested in discussing research findings, etc.

The authors suggest that the high level of activity in ME/CFS could be explained by action proneness (2). However that study was retrospective and thus could be affected by recall bias. Research that utilised an "action proneness" questionnaire, when individuals were actually ill with ME/CFS, found lower levels compared to the general population (1).

The paper also mentions the "boom-bust" theory with regard to activity levels in ME/CFS. However, there is evidence that activity levels in ME/CFS patients don't fluctuate any more than control groups (3,4).

We are told that "research on support group participation for CFS/ME sufferers indicates that active members report greater symptom severity and less improvement of the disorder than inactive members (5)". However the study, which also involved fibromyalgia, found that employment rates, an important measure of overall functioning was not statistically different between the two groups.

If there are particular issues in ME/CFS that are driving patients to internet forums, perhaps in time they will improve e.g. the stigmatisation mentioned. Also, more effective therapies for ME/CFS may become available - currently there are no FDA approved drugs for the condition, which can lead patients to be interested in numerous speculative therapies.

References:

(1) Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111 http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx (last accessed: January 4, 2013)

(2) Van Houdenhove B, Onghena P, Neerinckx E, Hellin J. Does high 'action-proneness' make people more vulnerable to chronic fatigue syndrome? A controlled psychometric study. J Psychosom Res. 1995 Jul;39(5):633-40.

(3) Meeus M, van Eupen I, van Baarle E, et al. Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study. Arch Phys Med Rehabil. 2011 Nov;92(11):1820-6.

(4) van der Werf SP, Prins JB, Vercoulen JH, van der Meer JW, Bleijenberg G. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res. 2000 Nov;49(5):373 -9.

(5) Friedberg F, Leung DW, Quick J. Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members. J Rheumatol 2005;32:2416-20

Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid.