Has CBT and/or GET harmed you?

[Nielk]

I am seeking first hand accounts of how CBT/GET has harmed you. If this type of "treatment" has been tried on you and you have seen a direct correlation with a decline in your ME/CFS symptoms, please reply here on this thread or PM me with a short account of your experience. I want to gather them and include them in my speaking spot at the next CFSAC (March 11th) webinar phone-in meeting.

The format should be something like this:

What is your age/sex?
How long have you been sick?
What was your level of functioning before CBT and/or GET?
What is your level of functioning after CBT and/or GET?
In what way has this effected the quality of your life ?

Thank you.

 

[Esther12]

Beyond focusing on just things like this, I also think it's fair to point out that the exaggerated claims made about the value of CBT/GET are also harmful in and of themselves:

- they distort patient decisions, leading to patients committing time and effort to therapies that they would not have bothered with if they had been provided with more accurate information.

- it leads to patients, friends/family, society/insurers/DWP thinking that individual with CFS have more control over and greater responsibility for their symptoms than they do.

- it leads to the view that patients dysfunctional cognitions mean that they should not be entitled to decide for themselves how to live their own lives.

- it leads to funds for research, and funds intended to improve the lives of patients, being misdirected.

etc, etc.

Sorry to go OT, I just wanted to point out the wider sense in which 'harm' occurs when inaccurate medical claims are made.

 

[Nielk]

Good points @Esther12 -

I have a limited window of three minutes to drive home the point that the fact that the CDC has defiantly refused to remove the promotion of CBT/GET from their website despite the urging from CFSAC and the ME/CFS community for the past ten years has resulted in countless harm to patients.

 

[Esther12]

Yeah - I thought it was rather OT, but just had to make the point!

re the CDC website: maybe it would be best to focus on getting the CDC to make the value of CBT/GET clear? eg providing figures for the likelihood of these interventions allowing patients to return to work; informing patients of the evidence that CBT leads to patients filling in questionnaires slightly more positively but not to them being able to actually increase their activity levels; informing patients of the danger of response bias for subjective self-report measures in non-blinded trials leading to worthless interventions reporting positive results; etc.

In medicine, those who make money from claiming to be experts hate saying 'nothing I can do to help', and given the poor quality of evidence around treatments for CFS, CBT and GET can become default options that people assume are harmless and may be helpful, so get promoted. Talking about harms is a good idea, but I expect they will continue to promote CBT/GET - getting them to do so in a more honest manner may be the most we could hope for.

Thanks for working on this.

 

[peggy-sue]

What about giving them proof of PEM on a 2 day exercise test?

http://www.cfids.org/archives/2004/su04-workingout.pdf

There is also the study which found that cultured muscle cells produced lactic acid at 20 times the normal rate, done by Julia Newton.

 

[Firestormm]

Great idea Gabby

And here I was thinking you were taking it easy

Would it not also be helpful to ask how long it took people to recover from any harm caused or setback induced, by CBT/GET?

BTW the ME Association will be publishing the results from a rather detailed online survey that will include anonymised accounts from patients who have undergone CBT/GET and Pacing therapies. Should be out by the Summer - I sincerely hope. Too late for your efforts unfortunately.

I shall look forward to hearing you at the CFSAC thing.

 

[Nielk]

I found this interesting graph showing the effectiveness of all different therapies for ME/CFS at Cure Together site.

http://curetogether.com/chronic-fatigue-syndrome/ig/treatment-effectiveness-vs-popularity

You can hover over each dot and it will tell you which treatment it is for. You will notice that the ones most in the bottom are for GET, alcohol and Paxil. These have the most adverse effects. The ones on top are rest, short break, spend time in low stimulating environment.

GET had a worse effect than alcohol. The CDC might as well recommend alcohol consumption for us....it would not be as bad as GET!

 

[Discotina]

Greetings and salutations recently diagnosed (as of last week) and currently waiting for my appointment for 'group information session' and was wondering if anyone could give me any idea of what to expect!
I'm based in Liverpool and have been told that treatment offered after the initial session could be months which just leaves me feeling hopeless!
Been backwards and forwards to GP since October with fatigue/sleep disorder/IBS/daily headaches/lack of temperature control/muscle aches the list seems endless and everyone just seems to think I'm over reacting and doesn't seem to understand so feeling extremely lonely. Doctor at hospital gave me a piece of paper saying I'd be offered CBT and GET if I chose to 'opt in' just really want some advice x

 

[Esther12]

Hi Discotina.

I have heard some bad things about the Liverpool centre, and I think that people there were involved with the FINE trial, which found that their 'rehabilitative' approaches to CFS didn't lead to any improvements, but did lead to therapists disliking patients (although some of those involved in this trial and making money from these treatments have still been trying to spin it in a positive way):

http://forums.phoenixrising.me/inde...ation-initial-presentation-to-patients.21416/

Personally, I'd be cautious and sceptical there, and assume that the people involved cannot be trusted, but try to get what you can from them. If they're any help with testing for alternative diagnoses, great. If they start offering to help you 'manage' your life, I'd run away! (You may have different preferences to me, but it you are interested in any sort of help with 'management' type things, I'd try to get as much info as possible from them about exactly what this involves, and how effective they claim it is, and then try to double check things for yourself or with others here. I find it helpful to record appointments so that I can know exactly what was said to me, and not miss any details).

Best of luck with everything. As you've not been ill that long (it probably doesn't seem like it to you) you could well find that you just end up naturally improving.

 

[Discotina]

@Esther12

Thank you so much for responding
I've suffered from headaches/muscle weakness/muscle aches/dizziness for almost 22 years but doctors never listened took a virus and sky high blood tests for people to listen to me (had a severe head injury as a child and I'm still convinced there's some connection there but again hitting a brick wall trying to get people to listen!) it's was googling the CFS Liverpool dept that brought me hear and I'm glad it did now! I wasn't overly convinced by the doctor who is referring me seemed like he was on auto pilot with his speech whilst ticking some boxes! My boss pays into a healthcare plan for us so I was wondering if it was worth me going through them but not sure if I would just end up still being referred to the Broadgreen dept!!!! Feeling more stressed than ever!

 

[Esther12]

I'm really wary of giving anyone advice, as I suspect quite a wide range of different problems end up being diagnosed as 'CFS', and no-one really knows what's going on. Those who try hardest to present themselves as experts are often the least trustworthy.

It does seem possible that those sorts of symptoms could be related to some form of brain injury, but I don't know, and if that were the case, I'm not sure that there would be worthwhile treatments available for you anyway.

Personally, I would maybe see any medical stuff as more of a chance to get information than as something likely to lead to a useful treatment. At the moment with CFS it does seem that a lot of the things sold as 'treatments' can do more harm than good.

After having said those stressful things, I would also advise you not to get stressed.... it'll be nicer for you to be relaxed. (wow - this is an amazingly unhelpful post. Sorry - don't have great and wonderful treatments to share!) Helpful sentence: Try to be informed and cautious, and remember that relaxing and playing about is quite possibly going to do more to make you feel better than listening to what doctors have to say). Best wishes for everything.

 

[Discotina]

@Esther12
Cheers it's just nice to speak to people who 'get it' I've been trying to get as much info as possible and you have been really helpful, keep up the good work

 

[Esther12]

Pleased to be able to be of a little help! It can be helpful to just be able to speak to other people with some similar problems, and see how they're reacting to things too.

Something like CFS can be really confusing, particularly when there's so much quackery about. A forum like this can be a helpful way of digging up leads and ideas. Even if some of the things you're told are wrong, it can help lead you to things that help you make up your own mind. Best of luck with everything.