Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

https://bmjopen.bmj.com/content/8/9/e020775

 

authors:

1. Victoria Jane Strassheim1,
2. Madison Sunnquist2,
3. Leonard A Jason3,
4. Julia L Newton4

 

Were these home visits ?
If you can' t get out of your bed/ house then I' m assuming that they were.

If otherwise, it seems simply set up to fail.

Or was proving how difficult things are basically the point?

Edit - added last sentence

 

Approximately 500 surveys sent in post, with about 70 responses, and 5 home visits.

 

This looks like a terrible return rate.
However, there were 2 different cohorts:

38 of these 58 people returned questionnaires, which is actually not bad (66%).

425 questionnaire packs were sent out by ME North East, but only 25 were returned.

 

I found this a little interesting. Most studies don't give such information:

 

The group that didn't satisfy either the Fukuda or the Canadian criteria were an odd group:

I'm not sure how they managed to get into the study. Anyway, I don't think one can say from this that there are loads of people saying they have with severe ME who don't have it upon examination.

 

I was a little frustrated when I first read about the response rate in phase 2. However, it was only the 4th visits that participant 1 and participant 3 missed. It looks quite likely that if the study went on longer they might have been able to be accommodated.

 

I just read this study (a bit late!).
I filled in the (massive) questionnaires for phase one, so met one of the researchers. She seemed great.

I am pretty confused generally about papers like this, and why they seem pretty ok all the way through then switch on the BPS speak at the end. She references two such papers at the end, and one about mortality rates by Wessley himself! It may be that there are no others to reference, but it feels like a betrayal of trust, and that these researchers are disregarding our reality. Can’t they get published in the BMJ without saying the magic word “biopsychosocial”? Or do they really not understand the harms?

I actually read this paper to see if it contained anything like this as I remember reading another paper (a lit review I think) by Strassheim which uncritically referred to the PACE trial.

I would really like to see a bit of solidarity and obvious rejection of the BPS brigade from U.K. researchers. Referencing the BPS school only continues to bolster their careers and these things are counted in academic circles.

The Newcastle team seem to be doing some great work, but this just puts me off.

One of the references about MUS I can’t really understand but speaks about the MUS problem pointing to a need to move away from evidence based medicine as it’s clearly not working! There may be a finer point being made, but I couldn’t understand some of the terminology.

Am I over reacting?!

 

Yes I found this very strange. I think 6 gave another explanation for their symptoms (maybe they had being diagnosed as having CFS and that’s why they were captured?) and six had barely any symptoms at all, which is quite strange. I was glad the researchers didn’t speculate about why these people were claiming not only to have CFS but to be severely affected and practically housebound.

 

And 'holistic' to me seems to mean much the same as 'biopsychosocial'.

 

Overall, I'm glad that researchers are starting to look at severe and very severe ME. There's something a bit bull-in-a-china-shop about these early attempts.

I have severe, not very severe, ME, and this would be astronomically beyond what I can do. It would completely rule me out of participating in the study, due to the extent of the exacerbation that would follow even one of these visits, never mind 4 in 3 months. It's clear they sought and got input from mild/moderate patients and a charity, but I'm not sure they've really grasped the severity. I do understand that some with severe and even very severe ME might be able for this, but I suspect that others are like me and couldn't dream of it.

I share others' wonderings about the 12/56 who didn't fulfill criteria. I would have liked to hear more.

It reminded me of question 10 of the MEA's 2010 survey, where 18/3594 people reported that they had none of what were judged (debatably, in my opinion) as the key features of ME by Dr Charles Shepherd, who wrote the discussion sections:

Muscle Fatigue
Cognitive Dysfunction
Pain (esp in muscles & joints)
Sleep Problems
Mobility Problems

I found the many grammatical and editing errors really off-putting in a journal article. There are so many in the first few paragraphs alone.

I've read Victoria Strassheim's other papers and she does seem to be coming at this from the angle of severe and very severe ME being an avoidable aberration, i.e. very much informed by the deconditioning theory. She's not alone in this. My experiences with doctors would suggest that this is the mainstream view, and hers is at least more nuanced, with recognition of autonomic factors.

I think we need health professionals to accept that ME has severe and very severe forms, just like other diseases/illnesses. One of the most distressing parts of deteriorating from mild to severe ME has been the increasing blame. To put it simply, when I was mild I got a lot of positive feedback from doctors about how good my attitude was, how proactive I was being, and now that I am severe I get the opposite. My attitude and approach have not changed, only my level of illness, but I am now a "bad" patient in their eyes. Reconditioning didn't work, so I'm bad.

 

My gut reaction is that you cannot tell the feasibility of doing research on people with severe ME unless you specify what sort of research it is going to be. If I had severe ME I would be very picky about what sort of researchers with what sorts of reasons I was prepared to let in my house.

 

Is it this?
http://www.strokecenter.org/wp-content/uploads/2011/08/barthel.pdf

 

Independence on this scale, it should be noted, includes the use of aids. It's not true independence.

 

@Trish I think they must be using the modernized Barthel - where the scoring is changed to 0-20. So unable to do something scores 0, needing assistance scores 1, and independence scores 2. I’m fairly certain this was designed for stroke, so I don’t personally think it’s a good tool for ME. It is a pretty crude measure even for stroke....