Neurocognitive - Graded Activity Study: What Does It All Mean?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I don't have this study. I don't know what kind of "neurocognitive training" was involved or how they did the graded-activity (not exercise apparently). This appears to be an evolved CBT/GET study. I personally don't have a problem with the right kinds of CBT/activity management programs helping out.

My interest is in this.....
Moderate improvements from 'best practice' therapy are promising, but to date reported efficacy is based entirely on subjective measures.This is problematic, given the well-documented divergence between subjective perceptions and actual neurocognitive performance, including in this patient group.

These improvements were accompanied by improvements in symptom ratings (p's≤0.01). However, subjective ratings of neurocognitive difficulties, and CFS-related symptoms were not linked to objective performance improvements.
The people in the study apparently improved their neurocognitive functioning but didn't feel they had. My guess is that either
  1. the improvements were too subtle to notice.Note that they said moderate improvements..Note also that the problem of subjective not matching objective improvement is common; it's not just in ME/CFS.
  2. Ditto with the symptom improvement; it was there - but it just wasn't substantial enough for the patient to feel that much better.
  3. the effort remained the same; i.e. the patients did better but they still had to work hard and were fatigued by the tests....and that is what why they did not feel they improved that much (???)
Compr Psychiatry. 2016 Apr;66:166-75. doi: 10.1016/j.comppsych.2016.02.002. Epub 2016 Feb 9.Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions.
Cvejic E1, Lloyd AR2, Vollmer-Conna U3.
BACKGROUND:

Neurocognitive difficulties are commonly reported by patients suffering from chronic fatigue syndrome (CFS). Moderate improvements from 'best practice' therapy are promising, but to date reported efficacy is based entirely on subjective measures. This is problematic, given the well-documented divergence between subjective perceptions and actual neurocognitive performance, including in this patient group.
MATERIAL AND METHODS:

Subjective and objective measures of neurocognitive performance were obtained from 25 patients with well-characterized CFS before and after the completion of a 12-week graded-activity program incorporating a cognitive training component. Additionally, self-reported symptoms, cardiac autonomic activity (a relevant biomarker of stress responsivity), and their relation to neurocognitive improvements were examined.
RESULTS:

Substantive post-intervention improvements in subjective (p=0.006) and objective (including faster responses speeds and greater accuracy, p's<0.001) neurocognitive performance were documented. Participants also demonstrated reduced autonomic reactivity to the cognitive challenge at follow-up (p's≤0.01). These improvements were accompanied by improvements in symptom ratings (p's≤0.01). However, subjective ratings of neurocognitive difficulties, and CFS-related symptoms were not linked to objective performance improvements.
CONCLUSIONS:

These initial data provide the first evidence of objective neurocognitive performance improvements accompanied by a significant reduction in responsiveness in stress-related neural pathways consequent to cognitive-behavioral/graded exercise therapy programs. These findings provide support for the effectiveness of such programs in remediating clinical status. These promising findings warrant further investigation, including replication in a larger sample utilizing more controlled study designs.
 
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weyland

Well-Known Member
They used Fukuda, so no requirement for PEM = worthless study. They also excluded patients taking autonomic meds, i.e. basically everyone with real ME that has to take these drugs to even get out of bed.

When the results of research are completely counter to the every day lived experience of patients then the results are not to be believed.
 

weyland

Well-Known Member
This appears to be an evolved CBT/GET study.
What is evolved about it? It sounds identical to the British CBT/GET model to me.
2.3. Intervention The multi-disciplinary outpatient treatment program for CFS [42] has been established within a clinical academic framework combining interventions tailored to individual patients by providing CBT along with physical remediation and cognitive retraining. The program is delivered by one of two clinical psychologists and one of two exercise physiologists across six to eight individual one-hour sessions. These sessions incorporate an integrated modular treatment approach that has educational components, addressing difficulties with physical activity and exercise regulation (using a GET approach), sleep-wake cycle, neurocognitive functioning, and mood. Importantly, analogous to GET, patients are asked to pace and then gradually escalate their cognitive tasks (e.g. reading, responding to emails) by completing one or more timed sessions of such structured mental activity every day. When a tolerated routine was in place, the time spent on each activity and the level of intensity was progressively increased. The aim of this program is to assist patients with re-conditioning, both physically and cognitively, towards normal everyday functioning.
 

weyland

Well-Known Member
  • the improvements were too subtle to notice.Note that they said moderate improvements..Note also that the problem of subjective not matching objective improvement is common; it's not just in ME/CFS.
I think all this means is that the objective measures are not sufficient to detect the abnormalities.
 

Snow Leopard

Active Member
I think this reveals the importance of both objective and subjective improvements at the same time.

Also note:

Notably, the current sample was representative of those attending tertiary referral clinics, and was closely comparable to samples previously obtained from the same clinic [5,19]. However, this patient cohort tends to fall towards the lower end of the severity spectrum, and may be substantively different from those too impaired to attend such an intervention (i.e., patients with CFS that are bedridden).
The use of a within-subject design without an appropriate comparison group limits the findings of this study. The diagnosis of CFS for all patients was confirmed by clinical staff during the delivery of the first week of the treatment program, which precluded the option of waitlist control comparisons. Similarly, with CBT/GET considered best-practice for CFS, withholding treatment without a suitable alternative in a randomised control design would violate the principles of clinical equipoise.
Sounds like a BS excuse to me...
I dare say the effect might disappear given a case-control design and a longer followup period. It may simply be that the first time someone does those tests they are a bit intimidating, and the second time around is easier.
 

Seanko

Well-Known Member
People who have a chronic long term illness are going to be more prone to stress, anxiety & depression. If a person's brain is working overtime in response to the stressors, then they are going to use up more energy & a vicious cycle ensues. This energy loss being on top of the the dysfunctions caused by the physical illness

So a question...Should ME/CFS patients refuse to use techniques which could offer coping strategies to deal with mental health problems associated with a chronic physical illness?
 

bobby

Well-Known Member
Should ME/CFS patients refuse to use techniques which could offer coping strategies to deal with mental health problems associated with a chronic physical illness?
no, if it helps you cope, why not do it? It doesn't matter what the strategies were originally created for. It's like heart medicine that turns out to help diabetics (just making sth up here).

But I see a few problems:

1. Graded Activity (what this thread is about) is NOT a coping technique;

2. coping techniques are regularly offered to ME patients as if they were a cure, which is extremely offensive.

3. many coping techniques are physically impossible to carry out for many of us.
 

weyland

Well-Known Member
So a question...Should ME/CFS patients refuse to use techniques which could offer coping strategies to deal with mental health problems associated with a chronic physical illness?
When they encourage a graded increase in activity levels to "recondition" the ME patient? A resounding yes, they should be refused because they will lead to a worsening of their condition.
 

IrisRV

Well-Known Member
So a question...Should ME/CFS patients refuse to use techniques which could offer coping strategies to deal with mental health problems associated with a chronic physical illness?
No, if they have the mental health problems then they should be treated for those conditions, but it's not ME/CFS treatment.

Lots of cancer patients need psychological support to deal with the trauma of that illness. That doesn't mean that mental health problems are the cause of, or a major factor in, cancer. Mental illnesses can be caused by serious illness. There's a lot of trauma involved. The problem is too many people think of it the other way around. If, in some cases, mental illness and ME/CFS occur simultaneously, the idiots get it all bassackwards and assume the mental illness caused the physiological illness. :rolleyes:

Not all cancer patients need psych treatment for secondary mental illness. Not all ME/CFS patients need psych treatment, either. The decision to treat should be based on whether the patient has mental illness. Duh. Surprising how many doctors miss that obvious fact.

If mental health treatment is going to help your mental health issues, it makes no sense to refuse treatments on the grounds that your serious biomedical condition is not a mental illness. You're not treating your biomedical illness, you're treating your psych condition. Two different animals. If you don't have mental illness then it makes perfectly good sense to refuse mental health treatment.

OTOH, if someone offers to treat your serious biomedical illness with psych techniques, run for the hills and don't look back.
 
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Tony L

Active Member
So a question...Should ME/CFS patients refuse to use techniques which could offer coping strategies to deal with mental health problems associated with a chronic physical illness?[/QUOTE]
reading this with interest, as although we currently have no services here in Wales, they might start to roll out this year in the form of NICE guided PACE/GET/CBT.

On the one hand I totally reject this as an appropriate way to develop services for us in Wales. These treatments may prove helpful for some to fight co-morbid depression or simply help others to feel more valued/taken notice of. But this is not the way to develop a service for those suffering from a serious organic (often progressive) disease.

On the other hand I feel I will need to engage with the enemy as a means to find out exactly what is going on and to challenge those responsible within our Health service/National Assembly.
 

Gijs

Active Member
Can we define mental health problems in an objective way? Before we start a debate. Even a depression can be due to an abnormal functioning immune system, the same with anxiety etc... So what is a mental illness? I think mental illnesses are over-exaggerated and get too much attention in the medical field.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
When they encourage a graded increase in activity levels to "recondition" the ME patient? A resounding yes, they should be refused because they will lead to a worsening of their condition.
But what about Nancy Klimas's activity management program using heart rate monitors? She finds it can help.

If activity the day causes an increase in wakening heart rate then you did too much.....

Many people, I imagine, have to reduce their activity levels first, stabilize and then slowly increase - not to health but to better fitness and some reduction in symptoms.

????
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Can we define mental health problems in an objective way? Before we start a debate. Even a depression can be due to an abnormal functioning immune system, the same with anxiety etc... So what is a mental illness? I think mental illnesses are over-exaggerated and get too much attention in the medical field.
Very true...inflammation appears to cause depression in about a third of people with depression. What are the odds given the immune problems in ME/CFS and probably FM that most of the depression - which typically post-dates ME/CFS/FM - comes from immune activation in these diseases? I'll bet the odds are high that most of the depression in ME/CFS/FM comes from the immune system.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
People who have a chronic long term illness are going to be more prone to stress, anxiety & depression. If a person's brain is working overtime in response to the stressors, then they are going to use up more energy & a vicious cycle ensues. This energy loss being on top of the the dysfunctions caused by the physical illness

So a question...Should ME/CFS patients refuse to use techniques which could offer coping strategies to deal with mental health problems associated with a chronic physical illness?
Good question....

ME/CFS patients have a chronic illness...We know that rates of depression understandably go way up in people with chronic illnesses. No one is trained in how to handle a chronic illness! So my answer is yes....Do whatever you can to reduce the stress of having this or any other illness. Some people might want to check an ongoing series called The Last Best Cure as Donna Jackson Nakazawa uses meditation and other practices to improve her health after a getting a severe autoimmune disorder.

http://www.cortjohnson.org/blog/2014/07/02/think-meditation-disability-last-best-cure-iv/
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
No, if they have the mental health problems then they should be treated for those conditions, but it's not ME/CFS treatment.

Lots of cancer patients need psychological support to deal with the trauma of that illness. That doesn't mean that mental health problems are the cause of, or a major factor in, cancer. Mental illnesses can be caused by serious illness. There's a lot of trauma involved. The problem is too many people think of it the other way around. If, in some cases, mental illness and ME/CFS occur simultaneously, the idiots get it all bassackwards and assume the mental illness caused the physiological illness. :rolleyes:

Not all cancer patients need psych treatment for secondary mental illness. Not all ME/CFS patients need psych treatment, either. The decision to treat should be based on whether the patient has mental illness. Duh. Surprising how many doctors miss that obvious fact.

If mental health treatment is going to help your mental health issues, it makes no sense to refuse treatments on the grounds that your serious biomedical condition is not a mental illness. You're not treating your biomedical illness, you're treating your psych condition. Two different animals. If you don't have mental illness then it makes perfectly good sense to refuse mental health treatment.

OTOH, if someone offers to treat your serious biomedical illness with psych techniques, run for the hills and don't look back.
I actually would not limit this help to people with mental illnesses....I would say that many people with a chronic illness could improve their QOL and even health to some degree from things like MBSR, meditation, etc. At the end of her year using these kinds of techniques Donna Jackson Nakazawa found her immune results had improved greatly. She was still quite inhibited by her autoimmune disorder - but she was doing better.
 

weyland

Well-Known Member
But what about Nancy Klimas's activity management program using heart rate monitors? She finds it can help.
That's great for the people that are mild enough to handle that or don't have POTS. Those of us that have POTS and/or those that can't even cover their ADLs don't have this as an option.
 

IrisRV

Well-Known Member
That's great for the people that are mild enough to handle that or don't have POTS. Those of us that have POTS and/or those that can't even cover their ADLs don't have this as an option.
Dr Klimas' program would treat your POTS, for starters. Her program never has you doing more than you can do safely. That's the point of the HR monitor. Activity in her program is not 'exercise', it's any activity. In the moderately affected, it can help you determine which ADLs you can do safely and which you need to modify or stop doing.

When I started this kind of program, I was severe. I discovered I had to do a LOT less, not more. My ADL's had to be modified substantially and some I just had to stop doing entirely.

If, and this is a big if, you find that you could do more and still stay below your AT, then you are encouraged to do a little bit more every week until you reach the point where you're doing all you can with what you've got. That's the point. It's not GET. You increase if your body is able as measured by your HR relative to your AT and the impact on your next morning BP.

I like it. It helps me get the most I can out of what I've got without constantly crashing myself or living that roller-coaster life. As my treatments started working, I occasionally did a little bit more to see if I could. If I could stay below my AT and not impact my next morning BP, them I was good continuing to do that little bit more. If not, fine, I went back to my previous activity level.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
That's great for the people that are mild enough to handle that or don't have POTS. Those of us that have POTS and/or those that can't even cover their ADLs don't have this as an option.
Understood...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Dr Klimas' program would treat your POTS, for starters. Her program never has you doing more than you can do safely. That's the point of the HR monitor. Activity in her program is not 'exercise', it's any activity. In the moderately affected, it can help you determine which ADLs you can do safely and which you need to modify or stop doing.

When I started this kind of program, I was severe. I discovered I had to do a LOT less, not more. My ADL's had to be modified substantially and some I just had to stop doing entirely.

If, and this is a big if, you find that you could do more and still stay below your AT, then you are encouraged to do a little bit more every week until you reach the point where you're doing all you can with what you've got. That's the point. It's not GET. You increase if your body is able as measured by your HR relative to your AT and the impact on your next morning BP.

I like it. It helps me get the most I can out of what I've got without constantly crashing myself or living that roller-coaster life. As my treatments started working, I occasionally did a little bit more to see if I could. If I could stay below my AT and not impact my next morning BP, them I was good continuing to do that little bit more. If not, fine, I went back to my previous activity level.
Great explanation IrisIV. That just crystallizes what the program is about. What are ADL's? activity daily????
 

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