Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

Esther12

Senior Member
Messages
13,774
Likes
28,359
I'm sure you know more about the details than I, but I'm still struggling to believe they could really spend that much money on PACE without collecting the sort of data that would be of interest to those sceptical about GET and CBT. If I were them, I would want to desig trials that had a good chance of proving my ideas wrong, or else over-coming the objections of those who disagree with me. Not many CFS researchers seem very good at this.
Ahh - I was so young and innocent then.

I still think I was pretty much bang on with this:

That's just such a corrupt approach to research, but because there's being such a history of making misleading claims in order to help patients remedy their destructive thought patterns, it's difficult to give them the benefit of the doubt.

I think that the most damaging thing the GET/CBT lobby have done to CFS patients is introduced the notion that it's acceptable for medical professionals to mislead patients for their own good. It's destroyed our ability to trust our doctors or researchers and left us endlessly teetering on the edge of conspiracy theories. You're probably right to not spend much time thinking about it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,221
Likes
13,166
Location
Cornwall, UK
This is a bit out of my comfort zone, and this isn't an area where I've done much reading, but weren't a couple of those papers co-authored by those who run the labs whose testing was being used? Isn't Shepherd of the ME Association pretty critical of the claims made in those papers (I could be misrepresenting him here)? I've not really spent the time needed to look seriously at those papers, and I really don't have much faith in peer review ensuring that they are good pieces of work either.
You could be right - I haven't analysed the papers in detail or looked at declared or undeclared interests, or know what Shepherd says.
 

golden

Senior Member
Messages
1,831
Likes
1,125
It is utterly disgraceful, underhand and abusive behaviour taking place here disguised under medical titles such as 'doctor' , 'nurse' and hidden out in the open on hospital grounds.

No doubt there will be a new brand of it now disguised under smiles and friendliness. I wonder about the notes they are taking on patients.

I don't see much practical help for this. In fact the only charity I have seen to help me for this particular issue is:

The grace charity for M.E.

http://www.thegracecharityforme.org/documents.asp

Under there documents section they have 'how saying NO can be positive. This is aimed at empowering those of us who wish to refuse psychological therapy for physical illness.

There is a document to send off to M.P.

There is a hospital booklet.

Someone said bits of it are out of date, it would be good for all M.E. charities to have empowering things like this on i think.

I have heard some people were prevented from trialling out physical treatments whilst on this Liverpool cbt course which just astonished me. Whether its changed now I dont know.
 

Dolphin

Senior Member
Messages
17,563
Likes
28,271
It is utterly disgraceful, underhand and abusive behaviour taking place here disguised under medical titles such as 'doctor' , 'nurse' and hidden out in the open on hospital grounds.

No doubt there will be a new brand of it now disguised under smiles and friendliness. I wonder about the notes they are taking on patients.

I don't see much practical help for this. In fact the only charity I have seen to help me for this particular issue is:

The grace charity for M.E.

http://www.thegracecharityforme.org/documents.asp

Under there documents section they have 'how saying NO can be positive. This is aimed at empowering those of us who wish to refuse psychological therapy for physical illness.

There is a document to send off to M.P.

There is a hospital booklet.

Someone said bits of it are out of date, it would be good for all M.E. charities to have empowering things like this on i think.

I have heard some people were prevented from trialling out physical treatments whilst on this Liverpool cbt course which just astonished me. Whether its changed now I dont know.
This paper, which was published in a peer-reviewed journal, might be of some use:

Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Full text is available free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
 

golden

Senior Member
Messages
1,831
Likes
1,125
This paper, which was published in a peer-reviewed journal, might be of some use:

Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Full text is available free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
Thanks Dolphin! :)

I have not read all 52 pages yet.

The abstract of under reporting negative effects is not limited to M.E.

This has been going on throughout ALL medicine.

The SAARS was set up so patients can report side effects of medications. I was wondering if this could be applied to CBT/GET.

I am.going to find a link for it.

With these studies on the harm of get/cbt I suppose one must write a covering letter with the relevant bullet points in for a G.P. to read so that the G.P. understands and feels supportive and understanding if a 'NO' and doesn't simply assume it means we are not trying or wanting to be well or are being vexacious !

The other links to videos are unbelievable. I can't watch them yet as I must only take on the negativity it bite sized chunks. How can they be getting it so wrong?
 

golden

Senior Member
Messages
1,831
Likes
1,125
http://www.alternativevet.org/sarss.htm

Its SARRS - this little write up on this website gives an understanding in easy to read format of why under reporting of side effects have been occurring.

However what is interesting is that upon taking a drug, if it also does not do what it claims to do - this would be also cause of a SARRS .

I know of no Doctor who is reporting my adverse effects of drugs - ever. This will not be helping patients.

And isn't this just exactly the same as what has been happening with the CBT/GET 'treatments'.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,221
Likes
13,166
Location
Cornwall, UK
http://www.alternativevet.org/sarss.htm

Its SARRS - this little write up on this website gives an understanding in easy to read format of why under reporting of side effects have been occurring.

However what is interesting is that upon taking a drug, if it also does not do what it claims to do - this would be also cause of a SARRS .

I know of no Doctor who is reporting my adverse effects of drugs - ever. This will not be helping patients.

And isn't this just exactly the same as what has been happening with the CBT/GET 'treatments'.
I told a doctor of an adverse drug effect once. He looked up the list of known effects, then said it wasn't on the list so couldn't be due to the drug!
 

golden

Senior Member
Messages
1,831
Likes
1,125
I was just wondering if anyone knows if this is still the same?

I know that when doing the CBT course one must sign a consent form to say one will not do other treatment .

If this is simply a lifestyle management technique being used here , then why this stipulation .

Put another way - I cant imagine it going down very well with a Cancer diagnoses -

I am delaying treatment so that I can do a CBT course....

Some people are trialling different physical treatments for M.E.
 

golden

Senior Member
Messages
1,831
Likes
1,125
Does anyone remember or have a copy of the agreement that must be signed before undertaking the CBT course prohibiting other forms of treatment ?

Either at this clinic , or others across the country ?

.....thanks :)
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
I've read in papers about them trying to get patients to agree to that, but I didn't realise it would involve an actual contract that needs to be signed. I've never seen a copy of one.
 

golden

Senior Member
Messages
1,831
Likes
1,125
Thanks Esther12...

It is my understanding from two different people that part of the agreement to be signed is one only does CBT for the duration of the course.

Now , there maybe reasons for that but I am keen on clarifying this point . I expect CBT courses maybe run differently around the country too.
 

Dolphin

Senior Member
Messages
17,563
Likes
28,271
From Tate Mitchell (posted on Co-Cure)
https://listserv.nodak.edu/cgi-bin/...RE&P=R2&I=-3&d=No+Match;Match;Matches&m=27849

Subject: Liverpool CFS Clinic handouts

Note: the following booklet is part of the Pauline Powell/Liverpool CFS Clinic oeuvre, which formed the basis of the FINE trial. In it are yet more examples of ME/CFS patients being explicitly told that a) there is no organic disease whatsoever occurring in ME/CFS patients, b) if patients follow the exercises suggested in the handbook/pamphlet that 'the symptoms of CFS will gradually disappear', and c) that ME/CFS patients' symptoms following exercise should be 'mopped up by a 10-15 minute rest afterwards'.

The booklet is uploaded here- http://www.mediafire.com/?1m6i02ikqxrg78m

p.12-
"As there is no disease it is safe to gradually increase exercise and activity. But because your cardiovascular system and muscles are severely deconditioned, and body rhythms are out of synch, graded exercise is very difficult at first and progress does seem slow.

However, if you persevere with your exercises in a controlled (timed), gradually increasing way and check your sleep habits, you will build up your physical stamina and develop a regular sleep pattern. It is advisable to wear training shoes for exercises.

The symptoms of CFS will gradually disappear."
- p.25-
"-REST BEFORE AND AFTER EXERCISE

A SHORT REST (EG.,10 MINS) BEFORE EXERCISE PREPARES THE MUSCLES AND MAKES INCREASES IN EXERCISE TIME MORE POSSIBLE.

AVOID RUNNING EXERCISES INTO EACH OTHER, EG., GOING FROM A WALK STRAIGHT INTO DOING THE BIKE ETC.

SYMPTOMS SHOULD BE MOPPED UP BY A 10 TO 15 MINUTE REST AFTERWARDS. SOME EXERCIES WILL NEED MORE REST TIME THAN OTHERS. THE SUGGESTED MAXIMUM REST TIME IS 30 MINUTES AT THE START OF TREATMENT, HOWEVER, IN TIME, AND DEPENDING ON THE VIGOUR OF THE EXERCISE/ACTIVITY, 25/20/15/10 MINUTES OF REST MAY BE ADEQUATE." -

p.27-
"Symptom watching

CFS GROUP - SYMPTOMS

We know that there are physical symptoms in CFS but this does not mean that they a sign that you have a serious illness.

If you are aware of a pain/discomfort in your body you can become hypervigilant and therefore pay more and more attention to it. The more you focus on this symptom the worse it becomes and you worry more about it.

You may also believe that this symptom means that you have something seriously wrong with you. This may prompt you to pursue further tests. Even when they come back negative this may not reassure you for long as the symptoms are still there.

This often leads to unhelpful thoughts about the symptom and the condition."