Risk factors for severe ME/CFS, 2009, Pheby and Saffron

https://bnu.repository.guildhe.ac.uk/id/eprint/9823/1/Pheby, Derek Risk factors for severe ME & CFS.pdf
2009 paper
Derek Pheby and Lisa Saffron

Abstract

ME/CFS is a serious illness affecting several hundred thousand British people. Some 25% of people with ME/CFS may be severely ill (housebound or bedbound), sometimes for decades. This observational, questionnaire-based study was designed to identify risk factors for severe disease. Exposure to potential risk factors, including familial risks, personality, and early management of the illness, was compared in 124 people with severe disease and 619 mildly ill controls. Severity was determined by self-report and the Barthel (activities of daily living) Index. Premorbid personality was assessed using the Neuroticism and Conscientiousness domains of the IPIP scale. Analysis was by tests of association and logistic regression. Early management of the illness appeared the most important determinant of severity. Having a mother with ME/CFS was also important. Smoking and personality were not risk factors, neurotic traits being more frequent among the less severely ill. Conscientiousness overall was not related to severity.

 

I've put this 2009 paper in a the 'psychosomatic research' subforum as it investigates whether personality is a risk factor in the severity of ME/CFS. It seems to conclude that it is not.

This paper has been cited as evidence of the need for early management in order to manage the risk of developing severe ME/CFS. Neither the information resource nor the abstract here suggests what 'early management' is associated with lower risk, so I thought it was worth having a look.

 

On personality type:

I liked that the authors recognised that their investigation approach created a bias, with determination, stoicism and aspects of conscientiousness like to have been prevalent in those people with severe ME/CFS who chose to participate and actually finish the questionnaire.

In fact, they were remarkably frank about the feedback they got from participants, who criticised the fact that they were contemplating the possibility that the illness was driven by personality and also the cognitively demanding nature of the survey.

On other studies:

(Note that years later Hickie and others wrote a very bad paper where they tortured the Dubbo data trying desperately to show that actually neuroticism was related to prolonged CFS.)

 

On depression:

 

On factors associated with severity:

Familial factors

Pre-illness exposures

 

Management in the early stages of the illness

Conclusion
I really don't think we can make much of the findings about management in the early stages. People who have severe ME/CFS or are naturally getting worse can be expected to have a poorer relationship with their doctors, versus others who aren't so affected or are improving. They are also more likely to get treated by psychologists. They are more likely to be dissatisfied with the treatments they are given.

There isn't evidence here for people who are given activating therapies becoming worse - the right questions for that are not asked.

Similarly, we would expect people with more severe illness to have more social problems including problems with social security - because their need is greatest, and they have the least capacity to jump through the hoops, and because the degree of skepticism about their illness is likely to be greatest. I think the direction of causality is 1. severe illness>>> 2. problems with medical and welfare staff and a longer diagnostic odyssey.

Weirdly, given the comments about sex and familial relationships being predictive of severity, these are the items in the paper's model:

• Occupation
• Problems with social security
• Interval between falling ill and diagnosis
• Perceived value of initial treatment
• Relationship with GP before and after diagnosis
• Involvement of a psychiatrist in initial treatment

I think there may have been some correlations e.g. between sex and occupation there.


But yes, in summary, I don't think this paper should be cited as evidence that initial management makes a difference in disease outcomes. It doesn't track changes in severity from the first weeks until later.

 

I've never been more thankful for being lost in the system than I am for having dodged the bullet of exercise treatment for ME when I dropped out of high school and got no help. In stead I got two years of taking things at my own pace and eventually was able to complete school and go to university.

 

Before diagnosis, 2.9% of the people with mild severity got CBT while 6.5% of the people with severe severity got it. Also before diagnosis, 3.7% of the people with mild severity and 8.5% of the people with severe severity got GET. So, it's possible that these therapies made people get physically worse. It's certainly possible that these therapies contributed to poor relationships between the severe ME/CFS people and their health providers.

But, it's also possible that people who were already struggling with being very ill were prioritised for places on CBT and GET, and that's why they got the treatments.

I guess we need to track function and treatments in stratified Long Covid groups over time so that we can actually answer the question going forward.

 

If somethings hides in the X chromosome, women are usually less at risk since we have a copy. But mitochondria DNA is from the mother's line too.

 

Seeing a psychiatrist was associated with having severe ME/CFS (versus having mild ME/CFS). But, it's just an association; there are at least a couple of reasons why someone with severe ME/CFS might be more likely to be given a referral to a psychiatrist. It's not proof that seeing a psychiatrist worsened ME/CFS.

 

Does anyone have a link to that readily to hand?