Tricia Pendergrast et al on housebound versus non-housebound ME-patients. Study correctly described?

Perhaps some of you remember the study Housebound versus non housebound patients with myalgic encephalomyelitis and chronic fatigue syndrome from last year by Tricia Pendergrast, Abigail Brown, Madison Sunnquist, Rachel Janice, Julia L. Newton, Elin Bolle Strand and Leonard A. Jason.

Participants from USA, UK and Norway filled out questionnaires. Basically the study found that housebound patients were significantly more impaired with regards to symptoms compared to individuals who were not housebound.

On the subject of mental health it says:

Analyses revealed no significant differences in prevalence rates of comorbid psychiatric condition (major depression, bipolar disorder, anxiety, schizophrenia, eating disorders, and substance abuse) between individuals who were housebound and those who were not housebound.

Results from the medical outcomes survey demonstrated that the housebound sample was not significantly more impaired with regards to mental health functioning or limitations in usual roles due to emotional problems.

These results corrobate previous literature that found housebound and not housebound patients did not differ on most scales of psychological well-being, nor did emotional distress relate to general illness severity in patients with ME and CFS.

These results indicate mental health or problems with daily activities as a result of emotional problems are not predictive of whether or not an individual with ME or CFS will become housebound.

Rather, the significant differences in functionality between housebound and not housebound individuals are reflected in physical functioning, bodily pain and problems with daily activities as a result of physical health.
Source page 10 in full text

So far so good.

However...

In the recent edition of In Best Practice, Norway - Section Psychiatry/neurology there is a text called "Housebound have more symptoms than non-housebound CFS/ME-patients".

It is written by Elin B. Strand (co-author of the study) and senior doctor Ingrid B. Helland - leader of the national center of excellence for CFS/ME in Norway and with a biopsychosocial approach to ME.

Sadly the references in the text have not been added in the online edition, but it must be the same study they are writing about.

But their last paragraphs state the opposite of what the study shows:

(my translation with help from google)
Housebound are socially isolated, have little or no contact with therapists and limited contact with their other networks. They are largely left to themselves and their symptoms, and this is usually a risk situation, both for increased focus on symptoms and increased symptom reporting. Isolation is also a risk factor for reduced mental health. This study shows a clear difference in symptom reporting between housebounds and non-housebound, but no difference between the groups on mental and emotional aspects measured with SF-36.

When we look at this patient selection, they have on average somewhat worse mental health than the Norwegian norm for this scale.6 A somewhat lower mental health in the patient group may have contributed to increased vulnerability to disease development and symptom reporting or due to significant symptom pressure, isolation and reduced activity and participation over time. That housebound experience more symptoms than non-housebound can also be explained by significant under-stimulation and extensive bodily inactivity over time.

This isn't what the study says at all!
How is it possible to just make up stuff like that?
And it looks like they're getting away with it.

Source: Best practice - Psykiatri/Nevrologi - Husbundne har mer symptomer enn ikke-husbundne
Google translation: Housebound patients have more symptoms than non-housebound CFS/ME-patients

 

Anybody up for bringing it to the attention of the other co-authors? Or at least Jason and Newton?

 

That would be great! I'm curious on what they think about how this study is described. The google-translation is a mess, so if anyone requests a human touch, I can give it a go.

 

A bit OT, but I was just reading this article with Helland praising the results from SMILE, and thought I'd post it here: https://translate.google.com/transl.../09/21/-dette-er-veldig-spennende-resultater/

 

Psychologist Silje Reme is one of the editors of Best Practice

She wrote a qualitative study called "Experiences of young people who have undergone the Lightning Process" in 2013 and is very pro CBT as approach to ME.

 

So it seems I was up for it..

It might be that they won't feel able to comment for a variety of reasons, but at least I've let them know.

 

Thank you @Andy !

 

I would be excited about a reply. Thank you @Andy!

 

That's a great letter, thanks Andy.
It's so great to see new advocacy coming out of this forum and people writing letters and just 'doing it'.

 

Lenny has replied, thanking me for alerting him and saying that he'll now talk to one of his co-authors about it tomorrow. So good job team, they are aware of it at least.

 

Very pleased to hear this.
Thank you once again, @Andy

 

If he didn't know that would be made public, could be worth staying quiet for now?

 

Further reply from Lennie. I've copied the full response below but the most important quote seems to be "Specific analyses are presented below, but to summarize, our samples, when controlling for the factors above (and when comparing our Norwegian samples to Norwegian norms) do not have lower mental health functioning than we would expect for females in their mid-40s, especially when comparing them to individuals with medical conditions.".

This is his full email so I have no idea if he will be taking any further action but at least we know that he disagrees with Strand's interpretation and that he was happy for this to be distributed further.

 

Thank you @Andy, and thank Lennie!

 

So nice to read a reply from prof. Jason.

It is very odd of Helland/Strand to suggest that a lower mental health can have contributed to illness development, instead of the other way around, that chronic disease can have resulted in lower mental health compared with healthy control groups. They also imply that inactivity can be a reason for more symptoms in housebound ME-patients, instead of the other way around, that more symptoms lead to becoming housebound.

I am really disappointed that they are using the study to front their biopsychosocial approach to ME in this way.

 

You appear to be applying common sense there Kalliope, be careful!

I'm hoping to publish a paper soon showing that Norwegians watching chess on television caused Magnus Carlsen to be good at chess.

 

Wow, Andy, way to go!

It's interesting to note how BPS school seems to be doubling down on just outright lying.
To their credit, they have been getting away with it, so it's been a strategy that has historically served them.

How do we take this to a level where it can no longer be perpetuated/swept under the rug?

 

There was a debate this autumn in a Norwegian newspaper about ME, where professor Wyller (biopsychosocial approach) managed to defend the PACE-trial by referring to the special edition on PACE from Journal of Health Psychology. 19 top scientists had answered the criticism towards PACE, prof. Wyller wrote. He failed to add that this was 1 in a total of 20 contributions in the edition where the other articles tore the trial to pieces. Nor that this one contribution he did mention was written by among others PACE-researchers themselves.

He ends with giving a lesson about science, claiming science is not about winning a debate, but to find truth..

Source: Feilinformasjon om ME kan skremme pasienter fra dokumentert behandling
(Wrong information about ME can scare patients away from documented treatments).

 

What a piss-poor argument.

I'm amazed that there are still people who want to try to defend PACE without engaging in any of the details of the debate. It's so odd to me.