Poll: Depression Free ME/CFS studies?

[Seanko]

One of the interesting things to emerge from last year's CMRC conference was that Prof Julia Newton now does her studies on muscle, nervous system & vascular dysfunction with a depression free group.

One of the problems with PACE & similar studies is that patients have not been grouped into sets comprising of patients with & without depression. This could have serious impact on the results as depressed individuals may benefit from CBT or GET but patients who do not have mental illness problems may not.

So should all future ME/CFS studies be conducted with a depression free study group?

 

[Merry]

How does a researcher determine if a person is depression-free?

 

[Seanko]

@Merry
Here are somethoughts on how it might be done

In the initial vetting process of any trial, a patient will fill in a questionnaire about existing & previous medical conditions and asked to give details
eg heart disease, diabetes, cancer, depression.

They will also be asked about medication they take and to give details.

This would give data on who also has been diagnosed as having Fibromyalgia, POTS, depression or any illness you wish to look at as part of the ME/CFS study. It's not absolutely inclusive or exhaustive but it is a start.

 

[Seanko]

@Merry I have found a paper written by Prof Julia Newton on POTS & ME/CFS which includes a way of determining which patients or depressed.
Julia Newton study of POTS & ME/CFS in British Medical Journal 2014

[article]Hospital Anxiety and Depression Scale
A validated anxiety and depression measure optimised for use in patients with chronic disease.16 Individual subscales comprise seven items, each with a potential score 0–21. For the purposes of this study, ‘caseness’ for depression or anxiety was defined as a score of 11 or greater for the subscale.[/article]

 

[Seanko]

I would say it is worth doing as fatigue caused by ME/CFS & depression manifest themselves in different ways.

 

[Merry]

@Seanko, thank you for taking the time -- and energy! -- to write out your thoughts on this and to look up information from an article by Julia Newton.

I see the point of screening out patients who fit the criteria for depression only, but I don't see how it would be possible or even useful to try to separate out ME/CFS patients who say they are depressed, or whose doctors say they are depressed, or who get a certain score on a depression survey from ME/CFS patients who say they aren't depressed and who haven't been labelled depressed by a doctor and who haven't shown up depressed on a particular survey.

The PACE researchers were stupid to use Oxford, which requires fatigue only, and then claim that CBT and GET were appropriate for people with ME/CFS. They didn't and don't understand the patient population they pretend to be serving. Or they are sadistic so and so's.

 

[Seanko]

@Merry I believe at Newcastle University they use the Fukuda criteria.
The idea is not to discriminate against people who have depression on top of ME/CFS. Any person facing the challenges of currently an untreatable long term chronic illness is susceptible to depression or anxiety.

At that centre, they are concentrating on looking at muscle, vascular & nervous system dysfunction. The reasoning behind the depression free cohorts is to show the reason behind the PEM & fatigue in in ME/CFS is due to physical abnormalities ie that the illness is not all in the mind.

 

[Seanko]

@Merry one of the many problems with PACE is the patient definition was far too broad. Somebody with depression who made it into that study could conceivably be treated by CBT or GET...but the result would be meaningless as they would not have PEM, orthostatic intolerance & the other symptoms associated with ME/CFS.

 

[Merry]

No, I'm not saying that Julia Newton is discriminating against people with ME/CFS with depression. I just don't think it's possible to pick out a group of "pure" (i.e., "depression-free") ME/CFS patients. I understand that this decision of Julia Newton to try to identify such a group to use in her research is a response -- a political response -- to the justified criticism of how PACE researchers chose their subjects. Anyway, I wish Julia Newton the best. She is a serious researcher who does studies worth paying attention to.

 

[Cort]

Great question! I'm going to say no because there's probably a lot of depression in ME/CFS and I'll bet a lot of it is immune modulated.

On the other hand Natelson has, ironically, consistently found more neurological and central nervous system problems in people with ME/CFS who do not have depression than those who do. He thinks they are very different subsets and is engaged in a study right now to validate his earlier findings. This is surely one of the more interesting studies going.

I reserve the right to change my answer and I will hedge it a bit by saying that all studies should break up the participants in the studies into depression free and depressed subsets and see if that changes the results.

 

[JennyJenny]

I was told by my current psychiatrist, "You don't have depression." My friend said, "No, you don't have depression. You are always upbeat and think positively."

It would probably take a psychiatrist on the team but you can definitely rule someone in or out for depression.

Now anxieties? Now your talkin'. I have anxieties.

I say most definitely until we have a bio-marker for ME/CFS we have to do studies that rule out depression patients. When we have a bio-marker, then it is up to the study to probably just state as to whether the participant has depression or any other disease or illness.

 

[Cort]

I was told by my current psychiatrist, "You don't have depression." My friend said, "No, you don't have depression. You are always upbeat and think positively."

It would probably take a psychiatrist on the team but you can definitely rule someone in or out for depression.

Now anxieties? Now your talkin'. I have anxieties.

I say most definitely until we have a bio-marker for ME/CFS we have to do studies that rule out depression patients. When we have a bio-marker, then it is up to the study to probably just state as to whether the participant has depression or any other disease or illness.

Ha! I'm in the same boat. One of my doctors referred me to a psychologist. We talked for about five minutes when she said "I've treated a lot of depressed patients and you're not depressed!"

Anxiety? That's a different story. I remember Baraniuk saying the field missed the boat on depression/anxiety - he thought anxiety was the bigger deal in ME/CFS. At least for me - I would agree.

 

[Seanko]

@JennyJenny & @Cort The point about anxiety is true. Firstly to do basic life tasks is stressful for all of us on the fraction of the energy levels of a healthy person. Additionally is the anxiety ramped up by nervous system dysfunction caused by ME/CFS?

Recording sub-sets is the way to go for all research We might discover the responders (or not) to Rituximab or probiotics that way.

 

[Cort]

@JennyJenny & @Cort The point about anxiety is true. Firstly to do basic life tasks is stressful for all of us on the fraction of the energy levels of a healthy person. Additionally is the anxiety ramped up by nervous system dysfunction caused by ME/CFS?

Recording sub-sets is the way to go for all research We might discover the responders (or not) to Rituximab or probiotics that way.

My guess is that the ANS dysfunction is driving the anxiety type symptoms...

 

[Seanko]

My guess is that the ANS dysfunction is driving the anxiety type symptoms...

Too much fight or flight (sympathetic nervous system) but not enough rest & digest (parasympathetic nervous system)?

 

[tatt]

remember that Julia Newton is in the Uk where ME/CFS has been seen for many years as a psychiatric disease. So studying a depression free group is one way of saying look we have these people with problems you can't dismiss as easily as entirely in the mind. So I voted yes, although that may also introduce problems as the long term sick and most severely affected may also be more likely to suffer from depression.

Another way to do this would be to have as many people with depression in the control group as in the test group.

My doctors keep trying to label me as depressed because I'm not always happy, I think they have less understanding of clinical depression than I do. There is a massive difference between depression and low mood.

 

[Cort]

Too much fight or flight (sympathetic nervous system) but not enough rest & digest (parasympathetic nervous system)?

That's my laymen's opinion . Something is making me fidgety as heck and unable to settle down.

 

[Strike me lucky]

They need to approve biomarkers for mecfs. The 2 day cpet test should rule out depressed only from mecfs and those with mecfs who have depression . I agree with cort that depression is quite common in mecfs but its secondary as it impacts one life greatly .Generally depression only is improved with exercise where mecfs is worsened.

even post exercise cytokine studies show a difference between mecfs and depression.

i believe they need to use something like the cpet test with different immune tests eg rnaseL, cytokines and nk testing along with using the Canadian consensus criteria to help make a more effective diagnosis .

This saves using sketchy questionaires.

 

[Seanko]

@tatt Yes, it's Prof Newton's subtle way of making a point.

 

[IrisRV]

Doing clean research that eliminates other factors that might be contributing to symptoms is smart. It doesn't mean that people with depression can't have ME/CFS or that they shouldn't be treated. Eliminating factors that may confuse the results just helps that one set of data be clearer. Once the researchers have teased out the abnormalities in a clean sample set, the abnormalities can be investigated in other subsets of patients to see if they hold up across all patients or not.

This is also why a lot of research should be done on the most severe patients. It will probably make a clearer picture because they are effected more by the disease. After that, researchers will have to take those results and investigate less severe patients to see which things apply to all patients and which only develop with severity.

Sadly for those of us who are sick now, research is a long slow process.