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

Countrygirl

Senior Member
Messages
5,380
Location
UK
http://www.cambridge.org.https.sci-...rolled-trial/5D0DAAB8740D23688778FD2239317101

I hesitate to post this on the research forum, but for what it is worth.

This is a new paper just published in the BJ of Psychiatry which reports the successful treatment of ME with internet CBT.

Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial A. Janse, M. Worm-Smeitink, G. Bleijenberg, R. Donders and H. Knoop

Interventions, treatment adherence and treatment integrity

The two iCBT conditions tested in this trial are based on a face-toface CBT for CFS protocol.

17 The cognitive–behavioural model of CFS assumes that fatigue-related behaviours and beliefs perpetuate fatigue and impairment

Safety of CBT for CFS Internet makes evidence-based interventions more accessible to more patients, especially those living far from healthcare facilities and those whose mobility is compromised by their condition.

There is an ongoing debate in the literature and among patient advocacy groups that challenge the efficacy and safety of CBT for CFS. First, in line with previous studies this study has shown that a subgroup of patients with CFS were able to reduce their fatigue severity to healthy proportions and reduce their overall impairment and improve psychological well-being.18,32

Second, this study has shown, in line with previous research, that CBT is a safe intervention.33,34 Unfortunately, only half of the patients in our trial were asked to report on the occurrence of adverse events as this evaluation was not added until a portal update halfway through the study. Still, the available data did not show more patients with adverse events in the iCBT conditions compared with the waiting-list condition and none of the adverse events reported were serious. Furthermore, we found no evidence of a higher prevalence of clinically significant exacerbation in fatigue and other outcomes in the treatment conditions.


Implications

Our current trial was a first attempt to develop and test a web-based CBT for adults with CFS. We think that treatment results can be further optimised, for example by communication via video conferencing and using physical activity apps with affirmative feedback. In the Western world healthcare budgets are overstretched and psychological treatments are increasingly delivered digitally to reduce the costs of intervention. This web-based CBT programme, offers adults with CFS a new and efficacious treatment option.

:bang-head::ill::depressed:
 

Countrygirl

Senior Member
Messages
5,380
Location
UK
If virtual reality GET worked I would be cured. I am very active, as a computer toon, in many games.

What objective evidence of improvement or recovery might they provide? How do they excuse not doing that?

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?
 

Sundancer

Senior Member
Messages
569
Location
Holland
Yep, those are the Dutch psychobabbleboys... One of them sat on the committee that doles out funds for research, all the 2 million for ME research went to his group... and none to proposals for real medical research. ( this is some years ago)

A version for the public, hailing the the internettherapie has been published today on the website of one of our academic medic centra. Sneering at patient-associations who "claim that CBT is not effective and unsafe and that some people get more complaints doing this therapy".

De onderzoekers concluderen dat gedragstherapie via het internet veilig en effectief is. Zij denken dat nog meer CVS/ME-patiënten kunnen profiteren van behandeling door een intensievere vervolgtherapie aan te bieden aan patiënten die na de internet therapie onvoldoende verbeterd zijn.

the researchers conclude that CBT via the internet is safe and effective. They think that even more CFS/ME patients can have profit from this therapy by giving an intensive continuation to patents who have not enough improvement from the internet therapy.

so...first they say it is effective, and then they give intensive continuation therapy for those patients who did not miraculously cure themselves... yay, that's a nice way to get working hours for psychologists isn't it.

Pays well, when you have a job at an recognized hospital.
 

Sundancer

Senior Member
Messages
569
Location
Holland
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
 

Dolphin

Senior Member
Messages
17,567
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
They only used the fatigue subscale of the Checklist Individual Strength questionnaire not the other sections.

However in this study they did actually report the results of actigraphy/actometers and there was a benefit found for Internet-based CBT.
 

FMMM1

Senior Member
Messages
513
If virtual reality GET worked I would be cured. I am very active, as a computer toon, in many games.

What objective evidence of improvement or recovery might they provide? How do they excuse not doing that?

I think the issue of indicators is crucial. E.g. they could monitor the number of steps they take before/after treatment and see if that indicates lower fatigue. I think Fluge etc. may have used some wearable technology to evaluate fatigue. Also, what about other indicators such as brain lactate (MRS)?

Separately this is taken from the UK Rare Disease Implementation Plan:
"The core actions we intend to take to implement this objective are as follows:
 We will continue to develop and implement our genomic testing strategy
for the NHS, including determining which tests will be recommended for which
disease from single gene tests to multiplex panels and whole genome
sequencing
. This will be undertaken through the Rare Disease Transition
Working Group. [2017/18 through 2019/20] [C10, C43, C44]
 We will continue to identify a list of specific interventions that can be taken to
reduce delays in diagnosis, for example, identifying additional genetic tests
for rare diseases that can be added to existing panel (genetic) tests. We will
need to understand the clinical and cost effectiveness of these interventions
within the context of wider pressures on NHS budgets. The pace and
sequence of their implementation will depend on the extent to which they
describe a pathway in which unnecessary steps are removed, or timeliness is
improved or costs are reduced. [2018 through 2020] [C11]"


Researchers from Melbourne (Neil McGregor) presented data showing higher incidence of certain mutations in ME/CFS e.g. langerin (OMF Community Symposium 2017). However, the findings need to be trialled in a larger group.
Any views re the use of whole genome sequencing in ME/CFS?
 

Hip

Senior Member
Messages
17,787
These results can be discounted, as they used a very vague ME/CFS severity score, which was the fatigue severity sub-scale of the Checklist Individual Strength (CIS) questionnaire. The fatigue severity questions are the following:

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

Each statement is responded to by indicating whether you agree or disagree with the statement on a 7 point scale (with 1 meaning you full agree, and 7 meaning you fully disagree).

Source: here


But these sort of questionnaires are asking for a patient's subjective assessment of how he feels, and such subjective assessments are very unreliable. They can also be influenced by the "brainwashing" of CBT, where you may refuse to admit you feel tired even though you do.

If is much better to ask the patient about objective measures of their health, such as the amount of hours they are able to spend out of bed each day, as Dr Lerner's Energy Index Point Score does.

If you find you are able to spend more hours out of bed each day, that is an objective fact, and it is much more reliable to report on objective facts that subjective self-appraisals of how tired you feel.

Or another objective measurement is asking the patient where they are on the simple ME/CFS scale of mild, moderate and severe.


These psychologists should know better than to use unreliable subjective self-assessment.
 

alkt

Senior Member
Messages
339
Location
uk
they always use subjectivity because they know it will give them the results they want. it is not science.
 

FMMM1

Senior Member
Messages
513
they always use subjectivity because they know it will give them the results they want. it is not science.

I live in the UK as well (Northern Ireland).

1) If this is being funded out of public money then this needs to be challenged i.e. why is flawed research being funded using public money.

2) If this is being published in any journal then this needs to be challenged on the grounds the journal is publishing poor quality research.

3) If this is being used as a basis for public policy then this needs to be challenged on the basis that policy is supposed to be evidence based; contact your member of parliament etc. Get an MP to ask a parliamentary question; try the opposition they may be happy to embarrass the government (who commission the research).

Do any of 1 to 3 apply?

Sorry just back from an ME/CFS meeting.
 

FMMM1

Senior Member
Messages
513
Had a further look at this and the assessment criteria seem strange [see extract below]. They used an "actometer for 12 days" i.e. for the baseline (T0) and for T1 (6 months after randomisation) but not the T2 assessment.
"T2
Assessment consists of web-based questionnaires without wearing the actometer."


Anyone help me out with this? I shouldn't spend time on it though; rather look at biochemical stuff rather than this.

Thanks



From http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4013:

"Baseline assessment T0;
Baseline assessment consists of two visits to our centre and filling in questionnaires. Between these two test moments patients will wear an actometer for 12 days. The mean physical activity score over twelve days will be used to assess the level of physical activity.
The assessments at baseline are part of the standard diagnostic procedure for all referred patients. For this study two questionnaires will be added, namely a questionnaire concerning internet behaviour and use of modern communication tools and the EQ-6d for quality adjusted life years.

Internet therapy
After allocation to a condition people will follow the internet therapy for a period of maximally 6 months.

Assessment T1
Assessment 2 will follow the same procedure as the baseline assessment. See for a description ‘baseline assessment’. T1 will be assessed 6 months after randomisation.

Face to face CBT
Face to face therapy will be delivered according to the protocol described by Knoop & Bleijenberg (2010). It will be offered to those participants who are severely fatigued and/or disabled at T1. For patients continuing therapy with face to face CBT after the cognitive behavioural internet therapy, we expect fewer sessions are needed for reducing fatigue severity and disabilities to normal, healthy levels. Both interventions (i.e. CBIT and possible face to face CBT) will be carried out by the same therapist.

Assessment T2
Assessment consists of web-based questionnaires without wearing the actometer. T2 will be assessed at minimal 6 months after the session with the therapist about results of T1.
Drop-outs will be assessed directly after they drop-out and will be asked to fill in assessments at T1 and/or T2."