Psychosocial factors involved in memory and cognitive failures in people with ME/CFS

[Dolphin]

Future studies should measure the different aspects of fatigue, as it could be possible that more specific measures of fatigue (eg, cognitive fatigue) may actually have an effect on prospective memory, even if retrospective memory is controlled for.

They used the Chalder Fatigue Questionnaire (14 item version) which actually has two subscales, physical fatigue and mental fatigue, so could have done this with the same data if they had wanted.

 

[Snow Leopard]

They used the Chalder Fatigue Questionnaire (14 item version) which actually has two subscales, physical fatigue and mental fatigue, so could have done this with the same data if they had wanted.

With poor results, since the Chalder Questionnaire is fairly mediocre...

 

[peggy-sue]

This paper is a vast improvement.

Caught in the thickness of brain fog: exploring the cognitive symptoms of Chronic Fatigue Syndrome
Anthony J. Ocon*

• Departments of Physiology/Medicine, Center for Hypotension, New York Medical College, Valhalla, NY, USA

Chronic Fatigue Syndrome (CFS) is defined as greater than 6 months of persistent fatigue that is experienced physically and cognitively. The cognitive symptoms are generally thought to be a mild cognitive impairment, but individuals with CFS subjectively describe them as “brain fog.” The impairment is not fully understood and often is described as slow thinking, difficulty focusing, confusion, lack of concentration, forgetfulness, or a haziness in thought processes. Causes of “brain fog” and mild cognitive impairment have been investigated. Possible physiological correlates may be due to the effects of chronic orthostatic intolerance (OI) in the form of the Postural Tachycardia Syndrome (POTS) and decreases in cerebral blood flow (CBF). In addition, fMRI studies suggest that individuals with CFS may require increased cortical and subcortical brain activation to complete difficult mental tasks. Furthermore, neurocognitive testing in CFS has demonstrated deficits in speed and efficiency of information processing, attention, concentration, and working memory. The cognitive impairments are then perceived as an exaggerated mental fatigue. As a whole, this is experienced by those with CFS as “brain fog” and may be viewed as the interaction of physiological, cognitive, and perceptual factors. Thus, the cognitive symptoms of CFS may be due to altered CBF activation and regulation that are exacerbated by a stressor, such as orthostasis or a difficult mental task, resulting in the decreased ability to readily process information, which is then perceived as fatiguing and experienced as “brain fog.” Future research looks to further explore these interactions, how they produce cognitive impairments, and explain the perception of “brain fog” from a mechanistic standpoint. (more in the link)


http://journal.frontiersin.org/Journal/10.3389/fphys.2013.00063/full

 

[Wildcat]

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Megan Arroll, Dr Amolak Bansal and Vivienne Parry (remember her from the gruesome ‘Prime Project’?) are all involved in a (fairly) new charity called ‘ME Solutions’.


http://www.mesolutions.org.uk/



M.E. Solutions


http://www.mesolutions.org.uk/who-we-are/



M.E. Solutions is run by a dedicated and determined group of people, all with direct experience of the illness. It is this empathetic understanding of M.E. that is the driving force behind our commitment to make a real difference to people’s lives.


Our team is lead by: Dr. Megan Arroll:



Chief Scientific Advisor: Dr.Amolak Bansal



Patron. Vivienne Parry Vivienne writes and presents a wide range of programmes for Radio 4 including the multi award winning series ‘Am I normal’, and ‘Inside the Ethics Committee’ as well as a number of one off documentaries on science and medicine. A scientist by training, Vivienne is also a prolific writer, contributing to the Times Body & Soul section as well as to a wide range of other magazines and papers including the Mail on Sunday, Guardian and Good Housekeeping.

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Vivienne Parry is also on the Board of the Science Media Centre, amongst other things:

“She also sits on the council of the MRC, was a member of the Joint Committee on Vaccines and Immunisation, sat on the Duff Enquiry investigating TGN 1412 and subsequently on the Clinical Trials Expert Advisory Group of the MHRA. She is on the board of the Science Media Centre and the Cheltenham Science Festival.”

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http://www.vparry.co.uk/




The MHRA is the ‘Medicines and Healthcare products Regulatory Agency’

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[Wildcat]

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Megan Arroll, until recently, was Psychology Director at Alex Howard’s commercial Optimum Health Clinic (Coaching/NLP/Hypnotherapy and nutrition supplements).


Alex’s Howard’s book is called “WHY ME? My Journey from M.E. to Health and Happiness”, and contains the astonishing claim from Alex that he thinks he arranged to acquire ME in a Past Life, as a means of engendering his growth journey in this life. Alex’s most repeated phrase is “on the psychological side…..”




http://www.secretstorecovery.com/




http://forums.phoenixrising.me/inde...elitis-chronic-fatigue-syndrome-me-cfs.24301/

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[Wildcat]

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http://bmjopen.bmj.com/content/2/6/e001079.full

A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting

1. Megan Anne Arroll,
2. Alex Howard

Replies to the above:

http://bmjopen.bmj.com/content/2/6/e001079/reply





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(Optimum Health Clinic)
Alex Howard and Megan Arroll on 'The Maladaptive Stress Response'


http://www.camconferences.com/?page_id=12


Chronic Fatigue – March 2013


Saturday 9 March 2013.
Cavendish Conference Centre, London.
CPD accredited.


14.15 – 15.45: Psychology and ME/CFS: Not all in the mind…

Alex Howard

In this interactive session, Alex Howard will explore the role of psychology in ME/CFS, held in the context of a wider integrative framework. Joined by Dr Megan Arroll, Alex and Megan will also discuss some of the recent research conducted at The Optimum Health Clinic and suggestions for the future of the area based upon this.

Alex will begin by sharing his own personal journey with ME/CFS, along with exploring some short exercises with the audience to give them a “felt” sense of the psychological experience of ME/CFS. Alex will then explain the role of cognitive and emotional factors in this complex group of illnesses. This will include an exploration of the “Maladaptive Stress Response,” and treatment approaches for working with this pioneered at OHC, along with the various psychological subtypes and predisposing factors from a psychological perspective as understood by this integral approach.

Alex and Meg will go on to discuss recent research published by the OHC team in the British Medical Journal Open, and how this relates to nutritional therapists working with ME/CFS. Finally, they will share their thoughts for the future of ME/CFS both in terms of treatment and research, along with some of the exciting possibilities this holds for the wider CAM community.'

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[Wildcat]

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The Three Posts above are for Information Only, and are NOT intended as any endorsement, of the research referred to, or of the ME Solutions charity, or Alex’s Howards Commercial NLP/Hypnotherapy/Coaching/supplements clinic.

 

[Hip]

As for depression, we know that most depression measures are inappropriate for ME/CFS patients.
In this study they used the CES-D Scale.
Questions on this scale include:

• I did not feel like eating; my appetite was poor.
• I felt that everything I did was an effort.
• My sleep was restless.
• I felt lonely.
• I could not get "going".

What a waste of time.

The full set of questions of the CES-D Scale are listed here.

I can see two questions which would be inappropriate for detecting depression in ME/CFS patients, namely the questions:

5. I had trouble keeping my mind on what I was doing — well this is normal in ME/CFS with the ME/CFS brain fog.
7. I felt that everything I did was an effort — that can be normal in ME/CFS.

But to me, most questions seem quite appropriate for detecting depression in ME/CFS patients.

When you say "we know that most depression measures are inappropriate for ME/CFS patients", are you referring to some research that has demonstrated this?

 

[Hip]

Replace depression with any condition you choose, including ME. It is I think the interpretation that causes the problems and seeing many doctors or specialists doesn't always lead to a determining cause or successful treatment and a resolution of the symptoms, disability and return to full function.

You know, I watched Lipkin's Oxford presentation recently, and he was talking about something I have mentioned in jest with Bob before now. This Star Trek gadget that they use on the show to scan and diagnose a patient. Lipkin was saying how something similar will likely be seen in hospitals enabling quicker diagnosis from the bedside. But the gadget still requires programming by humans and using human knowledge and... interpretation.

Every conclusion that a human being comes to, based on the data put before him, depends on his or her interpretation of that data. This issue has nothing specifically to do with ME/CFS, depression, medicine, or even science in general; if you want to study this issue, you'd need to talk to some philosophers.

 

[Bob]

When you say "we know that most depression measures are inappropriate for ME/CFS patients", are you referring to some research that has demonstrated this?

Unfortunately I don't think I'm aware of any such research, but it would be very useful to cite. (I might have come across some literature that discusses the inappropriateness of using certain depression scales on medically ill patients, but I can't remember any details if I have.) I was referring to various discussions we've had on the forum. I probably shouldn't have used the word 'most' as I haven't studied all the various depression scales. I was talking about scales that I'm familiar with that regularly appear in CFS/ME literature.

I can see two questions which would be inappropriate for detecting depression in ME/CFS patients ... But to me, most questions seem quite appropriate for detecting depression in ME/CFS patients.

Don't you think the questions I quoted are inappropriate?

We are ill and inactive so we might have unusually low appetites.
A large proportion of us seem to have sleep issues.
Many of us are isolated, which can lead to loneliness.
And obviously everything is a lot of effort and we can never easily 'get going'.

I think roughly 10 questions are entirely inappropriate and roughly another 5 are borderline inappropriate.

 

[Hip]

@Bob
Alongside my ME/CFS, I used to regularly go through bouts of depression that would last for around a week, and so I am in the position of being able to easily compare my depressed periods with my non-depressed periods. It seemed to me that in my case, the depression was caused by biological not psychological factors, though now I have found some good antidepressant medications that work quite well for me, so I no longer have depression.

Regarding the question: "I did not feel like eating; my appetite was poor."
Certainly when I had anhedonia (a sub-symtom of depression), my appetite was so poor that I almost had to force myself to eat, and even when I did eat, I had no good feeling from eating, nor any of the normal satisfaction you get from filling your stomach. But once my anhedonia improved, I started getting my appetite back and began enjoying food again, even though my ME/CFS was still present.

Obviously that is just my own personal experience of depression and ME/CFS, though in general, loss of appetite is commonly found with depression, but not as far as I am aware commonly found in ME/CFS.


Regarding the question: "My sleep was restless."
Certainly ME/CFS involves plenty of sleep issues, such as unrefreshing sleep, circadian rhythm disruptions (eg: sleeping during the day and wide awake during the night), and being too "wired" to get to sleep. However, whether these ME/CFS sleep issues could be described as "restless sleep", I am not so sure. Very occasionally I get restless sleep if I have taken some sleep-perturbing drug or supplement just before going to bed; but other than that I rarely have what you could describe as restless sleep. Since both ME/CFS and depression can involve sleep problems, it may be hard to identify the exact type of sleep problem when answering a questionnaire. But personally I would not say I have restless sleep as a results of my ME/CFS.


Regarding the question: "I felt lonely."
I had some periods of depression where I had this intense emotional feeling of loneliness, but this would occur even when I was with people. It was a loneliness so severe, than even socializing with people could not cure it! So this makes me think that the feeling of loneliness in depression may not directly relate to how much human company you have or don't have, but rather is just biochemically generated by some biochemical pathology of the brain. Of course, in ME/CFS you may feel genuinely lonely if your disability prevents you from going out and meeting people.


Regarding the question: "I could not get going."
I may be wrong, but I interpreted this question as referring to how readily and easily you engage in tasks or activities. I had some periods where I had major motivational problems (a symptom often found in depression). This very low motivation — the inability of my brain to engage in tasks — did not seem to relate to my energy levels, but seemed to me to be an obvious malfunction in the motivational circuitry of the brain. Even for very simple tasks, like answering an email, my brain would not "take the bait" and engage in the task at hand. This became quite a serious problem for me, as nothing got done. And as I say, this was not due to lack of energy; it was because my brain lost the ability to instigate itself into tasks and purposeful activities. If you have never experienced this strange mental state of motivational deficiency, it can be hard to imagine. Eventually I found that low doses of the drug pramipexole greatly improved my motivational response, and I started doing things again, which was a greatly relief. You can start to view yourself as very lazy when you have this low motivation state; but in fact, as soon as you fix it with the right drugs, you get straight back to doing things again. Anyway, low motivation is common in depression, but is not uncommon in ME/CFS, so in this case, this question may not be that great at disentangling depression from ME/CFS.

Although in one thread I started here about low motivation in ME/CFS, everyone denied that there was any low motivation in ME/CFS, so if they are right, then this question would be entirely appropriate.


My above experiences with depression are of course just anecdotal, but I do think that you have to look quite closely at these questions before you can say they are either appropriate or inappropriate for estimating depression levels in ME/CFS patients.