What is known about severe and very severe chronic fatigue syndrome? A scoping review

[Karen Kirke]

I find it concerning that Friedberg et al’s 2016 paper was included in this review of studies on severe and very severe ME/CFS by Strassheim et al. Friedberg’s sample did not have severe ME/CFS. Friedberg et al’s paper sounds like it’s about severe ME, given that its title is “Efficacy of two delivery modes of behavioural self-management in severe chronic fatigue syndrome” and reference is made throughout to the patients having severe CFS.


However, mean SF-36 physical function score of the Friedberg et al sample was 38, same as PACE. Of 137 patients who we are told are severe, 50 indicated they were working, 21 full-time (patients could tick more than one category so this 50 figure may not equate exactly to a number of patients, since in theory one of these patients could have held a half-time job and a part-time job, or been both retired and working part-time). See table 1 p.164 http://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1205876?journalCode=rftg20. Patients also had to be "physically capable of doing the self-management program (e.g. walking assignments)" p.160. The cognitive load of the study was also very high - a 56 page booklet to read and daily online or paper diaries.

The patients in Friedberg's sample seem to have been considered severe for the following reason only “Given that patients were primarily obtained from five CFS-specialized physicians with large tertiary care practices in the US (primarily Utah and North Carolina), recruitment was considered likely to yield a more severely affected group of patients” (p.159). Friedberg’s sample was not severe, and this should have been picked up by Strassheim et al.

@Dolphin I just saw that you made the same observation about the SF-36 PF score in the Friedberg study last year here: http://forums.phoenixrising.me/inde...al-self-management-in-severe-cfs.45988/page-2 The difference from the PACE sample seems to be illness duration, with Friedberg's sample ill for longer.

 

[Cinders66]

Quick response to the points here, I haven't read the paper. Sensitivities to light and noise are AFAIC core features across severe ME affecting the 25%, not something confined to extreme cases. I find it concerning when mild affected patients- again about 25% - are often presented as the normal ME patient at work etc and the 25% who are severe seen as the odd minority or it presented as extreme. Many with ME have times confined to the bed or house and some have that as a long or permanent state, Extreme ME AFAIC is the tube fed, incontinent, mute presentation, morphine dependant not those in bed or sensitive to light.

I haven't seen lots that Newton or her MDT type research friends have produced on this subject that inspires total confidence in her on this and I'm also skeptical about how much direct contact she has actually had with the severely ill who can't travel to her clinic. Any at all? I know the physio has but If not Newton, just doing this type of paper persusing and hypothesising is then pretty stabbing in the dark stuff? Too much BPS/rehabilitation/deconditioning focus in the quotes posted here and not enough looking outside of her own specialism at possible immune system involvement etc and recognition of the desperate suffering & fragility of some individuals - Cort Johnson said in a recent article that the severity in ME can hit levels not commonly seen outside terminal illness. Can that really be explained by POTS and bedrest?im happy for further research in this area but there's many other possible factors.

Thank goodness we have researcher like ron Davis who not only has a very open mind, does great research but also is expert on the reality of the extremes of the illness. Really without severe inpatient clinics set up around the world or more Drs at consultant level getting out to work with afflicted families this particular field is going to continue to stagnate through lack of expertise, lack of research and disgrace isn't a strong enough word for neglect of the severe forms of an already horrible illness. Charities haven't lobbied enough for severe ME and yet the evidence has been there for years of the neglect, just look at the numbers of papers and interventions tried :-( .

 

[Deepwater]

Any time someone's waffling about heterogenity and various criteria, it's a good indication that they don't think it's a biomedical disease. If they acknowledged PEM, OI, etc, and the tests which document them, things would be rather straightforward.

Absolutely. It's turning the evidence on its head - a usual BPS trick. They declare ME/ CFS to be 'heterogeneous' rather than admitting their useless diagnostic criteria have caused them to lump lots of other conditions in with it.

 

[Deepwater]

Absolutely. It's turning the evidence on its head - a usual BPS trick. They declare ME/ CFS to be 'heterogeneous' rather than admitting their useless diagnostic criteria have caused them to lump lots of other conditions in with it.

P.S. And I share @Cinders66 's concerns about the sort of studies Julia Newton is putting her name to.

 

[Esther12]

That Bayliss paper they cite to support the use of a biopsychosocial approach is rubbish from the FINE lot: https://bmcfampract.biomedcentral.com/articles/10.1186/1471-2296-15-44

Newton has been putting her name to some junk recently. Maybe a refelction of the push for a 'collarborative' approach in UK research, although it's currently dominated by quackery.

 

[Karen Kirke]

Right but the hypersensitivity / hyperacusis is one of the more common symptoms for people ranging from mild to very severe. Obviously it affects some worse than others, but the symptom is there regardless of illness severity.

Does illness severity also indicate severity of hyperacusis? Maybe if comparing the mildy affected to the very severely affected. However, is it not possible that the hyperacusis of someone who is severely affected might, at times, be milder than of a moderately affected pwME?

Good point.

I agree with others who have pointed out the problem with Strassheim et al's comments on "restricted exposure to the environment" in someone with severe ME and POTS "in extreme cases leading to hypersensitivity to light and sound" (p.12) - the idea that light and sound sensitivity occur only in extreme cases of severe ME is not supported by patient experience or research.


Hypersensitivity to light and/or sound (and other stimuli) is experienced by people with ME of all severity levels. Jason et al’s 2017 study comparing housebound and non-housebound patients demonstrated this nicely: 59% of non-housebound patients reported sensitivity to noise compared to 70% of housebound patients. 54% of non-housebound patients reported sensitivity to bright lights compared to 64% of housebound patients. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/

We don't know how severe the hyperacusis was for patients, though, so it seems possible to me that individual patients could have more or less severe hyperacusis than their severity level might suggest.

 

[lansbergen]

is it not possible that the hyperacusis of someone who is severely affected might, at times, be milder than of a moderately affected pwME?

At times . yes. I am pretty sure it has to do with the intensity of the immune response at a timepoint.