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

Kalliope

Kalliope

Senior Member (Voting Rights)
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? :confused:
And it looks like they're getting away with it. :grumpy:

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
 
Andy said:
Anybody up for bringing it to the attention of the other co-authors? Or at least Jason and Newton?
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So it seems I was up for it..

Dear Professors Jason and Newton,

I’d like to bring to your attention to, what the patient community believes to be, a misinterpretation of your 2016 study, "Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome”.

A more in-depth discussion can be found here, https://www.s4me.info/index.php?thr...ts-study-correctly-described.1572/#post-26577, but, in summary, while your original study found that the difference between non-housebound and housebound patients were due to differences in the physical health of patients, your co-author, Dr Strand, now appears to be of the opposite opinion.

Along with a co-author, Dr Helland, they have written, in part, "When we look at this patient selection, they have on average somewhat worse mental health than the Norwegian norm for this scale. 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.” in the recent edition of Norway's In Best Practice.

Would you be prepared to comment on this interpretation? As I’m sure you can understand, the vast number of ME patients, and particularly the more severely affected, would object to having their symptoms blamed on their mental health.

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

Dear Andy:

Feel free to let others know about our analysis. It sounds like Dr. Strand was comparing the mental health scores of our participants to general population norms. However, three additional factors should be considered when making a comparison like this:
· Age
· Gender
· Illness Status (Individuals with medical conditions have lower SF-36 scores across both physical and mental health domains)

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.

Age- and Gender-Matched Comparison:
Combined Sample (the sample analyzed in the Housebound vs. Non-Housebound paper):
Our samples are primarily female and have a mean age of approximately 45 years old. The housebound group in our paper had the following means:
· Mental Health: 68.7 (SD = 19.4)
· Role Emotional: 74.4 (SD = 41.1)
The SF-36 manual provides the following norms for that age and gender group:
· Mental Health: 74.36 (SD = 18.08)
· Role Emotional: 81.92 (SD = 33.34)
Our sample’s means are just 6-7 points lower than population norms – approximately a third of a standard deviation (i.e., not clinically significant).

Norwegian Samples (unpublished):
Our Norwegian samples have a mean age of 41 and are also primarily female. They have the following means:
· Mental Health: 71.03 (SD = 17.15)
· Role Emotional: 74.40 (SD = 40.17)
A study by Loge & Kassa (1998), attached, published age- and gender-specific norms for a large Norwegian sample. The norms for females aged 40-49 are:
· Mental Health: 77.9 (SD = 18.4)
· Role Emotional: 84.1 (SD = 30.7)
These means are 6-10 points different, again, just a third of a standard deviation lower than population norms (i.e., not clinically significant).

Illness Status Comparison
Furthermore, we know that individuals with medical conditions have lower SF-36 scores across both physical and mental health domains than the general population, so we would expect our samples’ means to be lower than those of the general population. Here are norms for various illness groups provided in the SF-36 manual:
Hypertension:
· Mental Health: 77.86 (SD = 17.39)
· Role Emotional: 76.69 (SD = 35.74)
Type II Diabetes:
· Mental Health: 76.74 (SD = 18.32)
· Role Emotional: 75.60 (SD = 36.63)
These are very similar to the mean scores of our samples.
*There are several additional medical conditions examined in the SF-36 manual (e.g., congestive heart failure, COPD, etc.); all have equal or worse mental health functioning than our participants

To further highlight how our participants differ from those with psychogenic concerns, individuals with clinical depression have significantly lower mental health functioning than our participants (30-40 point differences in scores):
Primary Clinical Depression:
· Mental Health: 46.26 (SD = 20.83)
· Role Emotional: 38.90 (SD = 39.80)
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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.
 
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.
 
Kalliope said:
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.
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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?
 
Allele said:
It's interesting to note how BPS school seems to be doubling down on just outright lying.
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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).
 
Kalliope said:
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.
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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.
 
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