BMJ new paper : claims internet CBT successfully treats ME (!)

[Eiren]

Fatigue severity items

1 I feel tired
4 Physically, I feel exhausted
6 I feel fit
9 I feel weak
12 I feel rested
14 Physically I am in bad shape
16 I tire easily
20 Physically I feel I am in good shape

I don't know how I would answer these questions, exactly. I feel pretty fit, yes, and I also feel weak. I mean, I'm not going out running a few miles, but I think my muscles are pretty strong and my flexibility is in pretty good shape. But I am also in bad shape, my tendons flare up constantly and my hand strength is pretty weak and my heart rate and pulse is wonky. I also feel exhausted, but also feel like my body is in a constant state of rest.

If I was to mark "1" to every question, would that make me crazy?

 

[msf]

ME community: just fuck off!
Bps types (played by Alan Partridge): hahahaha!

 

[1gooddog]

looking through this paper

for measuring fatigue they used the Checklist Individual Strength, this is a list of 20 questions to be answered on a likertscale ( seven circles and make black the one that fits best to your idea,) I think it has a good validity, but...it is of course totally subjective.

the questions are arranged in four groups
subjective tiredness,( like I feel tired)
concentration, ( like I have trouble to get my attention focussed)
motivation ( like, i do not feel to do anything)
bodily activity , this is the only objective measure, but from the 20 questions there are only 3 measuring this..

this questionnaire is created by the some of the same people as the paper mentioned here.

They say it is good for both the clinical practice and for research. I doubt the last one, but for clinical practice I deem it good.

It thus has the same problem as other research, there is no objective measure used. Methinks when you use this scale for instance in a clinical practice, it can give a doctor a quick insight in whether a patient is stuck on a level, or going forward/backward.( all patients with fatigue I mean, for instance an older person recovering from an operation, or cancer and chemo. It is used for that)

But to use a scale like this after
iCBT consisted of seven modules aimed at change of fatigue-related behaviours and beliefs.9
is in my eyes decidly not valid, i scanned the rest but became nauseous

 

[1gooddog]

They still confuse tired with fatigue. Not even close.

 

[alex3619]

They still confuse tired with fatigue. Not even close.

I would argue that the F word is only appropriate when you limit it with numerous caveats. For example, what we get is fatigue that involves a ceiling effect on energy production that is worse than for healthy people; a decline in energy after we expend too much that is delayed, long-term, and can be indefinite, and an exacerbation of symptoms during such a decline. In other words, post exertional malaise is the defining feature, not fatigue.

Most diseases have fatigue as a component. Its far too vague a term, and refers to too many things by implication.

 

[starlily88]

This rings a distant bell @alex3619 . Didn't some UK bright spark of a psych suggest that a programme of video game playing would cure ME?

What Medical Journal is this from? The BJ of Psychiatry. I get JAMA journal sent to me - any articles on CFS never say this, none of my Hopkins drs think this ............ Wow, shrinks are nuts!!

 

[Sundancer]

Dutch shrinks...
No doctors here...( expect for one cardio, hope the ME-community can keep him)
further CBT and GET are pushed here, hard

 

[1gooddog]

I would argue that the F word is only appropriate when you limit it with numerous caveats. For example, what we get is fatigue that involves a ceiling effect on energy production that is worse than for healthy people; a decline in energy after we expend too much that is delayed, long-term, and can be indefinite, and an exacerbation of symptoms during such a decline. In other words, post exertional malaise is the defining feature, not fatigue.

Most diseases have fatigue as a component. Its far too vague a term, and refers to too many things by implication.

 

[1gooddog]

All of that is true and I like the PEM terminology. But tired is vague and inappropriate. It implies you didn't get enough sleep, you need more sleep. People have always said to me you are "tired". Get more sleep, eat better, get some exercise. Tired should be removed from the any wording relati g to ME/CFS.

 

[1gooddog]

I don't know how I would answer these questions, exactly. I feel pretty fit, yes, and I also feel weak. I mean, I'm not going out running a few miles, but I think my muscles are pretty strong and my flexibility is in pretty good shape. But I am also in bad shape, my tendons flare up constantly and my hand strength is pretty weak and my heart rate and pulse is wonky. I also feel exhausted, but also feel like my body is in a constant state of rest.

If I was to mark "1" to every question, would that make me crazy?

 

[1gooddog]

Exactly. Too generalized for ME. No caveats. I csn see it as a general use.
I have fatigue, PEM but not "tired". Muscles good, do not want to sleep, and actually feel energetic - just can't do anything about it. As i sit in bed staring out the window, I so want to go outdoors and do yard clean up. Exertion of muscles, spinning brain and dancing vision will not allow it. I am very allergic to house dust. The house needs a deep thorough cleaning. Yikes!

 

[nanonug]

Tired should be removed from the any wording relati g to ME/CFS.

This is one of the reasons, after seeing the recommendation by the Institute of Medicine, that I decided to start calling this condition SEID, Systemic Exertion Intolerance Disease.

 

[1gooddog]

This is one of the reasons, after seeing the recommendation by the Institute of Medicine, that I decided to start calling this condition SEID, Systemic Exertion Intolerance Disease.

Lol!
With a big dose if all systems overloaded.

 

[starlily88]

What Medical Journal is this from? The BJ of Psychiatry. I get JAMA journal sent to me - any articles on CFS never say this, none of my Hopkins drs think this ............ Wow, shrinks are nuts!!

Look I have PTSD for last 2 years - actually diagnosed by Johns Hopkins!
I went dutifully to trained PTSD MSW (social worker) - who was trained by the one famous New Yorker shrink that does the eye movement thing.

I got so so depressed - after 3 sessions - I went home - didn't leave my place for over one month.
Either she didn't do it right - or this whole dumb eye movement PTSD thing is bollocks for me.

I had nightmares every single night - still do - I hate going to sleep now - I remember most of the night mares for part of the day - so Cognitive Behavior Therapy - which I have done - does not change personality disorders, PTSD, mood disorders - well never worked for me - one cannot change a medical disease by therapy!! Starlily

 

[Sundancer]

Hi @starlily88 , I'm sorry to hear that. PTSD is awful ( I know...)
Lately i read a comment by a psychologist about EMDR, she said: yes, it often works. But we should be very careful with it, not use it the way we do now. Because we ask the patient to lay bare his fear/vulnerability/trauma in short order, without having build a bond of trust.

The opening up of the trauma can make people worse too and that is a risk that does not get mentioned ordinarily. I thought she had a point, and reading your story it seems to me she does have a point.

Imho CBT only works for relatively minor things, not for the difficult cases like PTSD/clinical depression etc.

 

[FMMM1]

Hi @starlily88 , I'm sorry to hear that. PTSD is awful ( I know...)
Lately i read a comment by a psychologist about EMDR, she said: yes, it often works. But we should be very careful with it, not use it the way we do now. Because we ask the patient to lay bare his fear/vulnerability/trauma in short order, without having build a bond of trust.

The opening up of the trauma can make people worse too and that is a risk that does not get mentioned ordinarily. I thought she had a point, and reading your story it seems to me she does have a point.

Imho CBT only works for relatively minor things, not for the difficult cases like PTSD/clinical depression etc.

There was a British TV program (broadcast 2018) which featured a British army officer who served in Kosov(?) who was being treated by walking on an escalator while viewing images of the war. I assume that this treatments has some status i.e. since he was being treated by the army.

 

[1gooddog]

This is one of the reasons, after seeing the recommendation by the Institute of Medicine, that I decided to start calling this condition SEID, Systemic Exertion Intolerance Disease.

This is a full body involvement disease.

I read somewhere that isolated outbreaks have occurred. When I has MS (temporarily, haha) and doing so much research, I found there were pockets of outbreaks reported.

This still leads me to think viral, bad batch of vaccine, anything confined to a certain area. Even Epstein Barre hibernating in the body much like chicken pox.

I would so like to share my history with researchers