(1/2) XMRV Professors: "CBT is the only treament for the Vicious Circle of Cancer"

[WhelkDoctor1]

Sorry , I didn't realise that CBT could cure brain stem inflammation. Could you please direct me to the studies that prove this. Also, perhaps sufferers might be more reassured if you could satisfactorily explain why they are banned from giving blood or donating organs even after death.

[justinreilly1]

Simon Wessely, scumbag par excellence.

[synapse131]

If patients with ME/CFS were worried about being stigmatized by a label, we would never admit to having ME/CFS and instead would deny this in favor of a diagnosis of depression. It's not at all that's there's some type of stigma associated with MH issues, it's that mental illness doesn't explain what we have experienced and is not the answer to ME/CFS. We deny a MH CAUSATION for the serious physical health issue that is ME/CFS. Depression would be much less stigmatizing than ME/CFS.

[synapse131]

I love the use of the word "burden." Of course he's thinking in terms on "burden" on the doctor's practice (meaning for the doctor) but it really exemplifies how they think of us in general. We're a "burden," not patients needing help and wanting real answers.

[Nugaot]

how can anyone who chooses to wear that hat be taken seriously?

[DoomNoMore]

"Since you assume my disease is mental, I am sure you would not mind to inject some blood of mine? After all, nothing is in there, right?

[titusLcarus]

PACE material below:

[titusLcarus]

Treatment is focused on addressing the cognitive and behavioural factors that maintain the vicious circle of CFS/ME

Factors that commonly maintain or perpetuate chronic fatigue syndrome can be

illustrated in a diagram that we call a vicious circle.

[titusLcarus]

In order to engage the participant in therapy, it is important that the therapist conveys to the participant their belief in the reality of their symptoms, distress and handicap. The therapist should be able to demonstrate a sound knowledge of CFS/ME as participants will generally be well informed about their illness and may have had "difficult" experiences with other professionals who may have not taken their problems seriously.

[titusLcarus]

If participants are insistent that there is an ongoing "physicial” problem, it is rarely

helpful to directly challenge them on this point. It is important that you acknowledge that their illness is real but its effects can be reversed by the way they manage it.

[titusLcarus]

The way that you present the rationale for treatment will be particularly important otherwise they may feel that you are trying to "psychologise” the illness. It is particularly helpful if they are sceptical about this approach, to draw a model of illness together, to look at all the factors that may have triggered it and be involved in maintaining it.

[titusLcarus]

Patients often feel reassured when they are informed that CBT helps people with a wide range of health problems including cancer, chronic pain and diabetes. It can be helpful for this group of patients to try to view aspects of CBT as an experiment.

[titusLcarus]

The following dialogue may help to engage participants in therapy.

Feeling that a physical cause has been missed and wanting further investigations

[titusLcarus]

Some participants may not hold a specific belief about what is wrong with them, but feel that despite many investigations, something has been missed. They may feel that they want to continue having investigations or try a variety of treatments until they are cured. Again, it is important to empathise with their situation, but to encourage them to hold off having further investigations until after they have completed a course of CBT.

[titusLcarus]

From your notes I can see that you have had many tests, none of which point to a

simple explanation for your fatigue. It therefore seems unlikely that someone would be able to detect an obvious cause of your problems.

[titusLcarus]

Although I can see the temptation of seeking further clarification of your problems, in reality what can happen is that you end up feeling more confused. I believe that your fatigue is a symptom of a bigger picture and I would like to spend some time discussing my thoughts on this matter with you. I wonder how you would feel about that?

[titusLcarus]

Therapist

What I suggest that we do is to get a large piece of paper and write down what we do know about your illness, including your symptoms, what was happening at the time you became ill and ways that you have been managing to deal with your illness to date.

[titusLcarus]

This information may help us to look at factors that may have triggered it and factors that may be involved in keeping it going. I hope this will help us to make some sense of your illness together before we move on to discussing ways of overcoming it. Would you give my suggestion a go?

Participant

Yes

[titusLcarus]

Try to go with the participants view as much as possible.

Join with them rather than oppose them.

[titusLcarus]

For participants who have a very fixed idea about what has caused their CFS/ME, e.g. a virus, chemical poisoning etc, you may need to spend more time on discussing the CBT model.

[titusLcarus]

Carefully discuss all of the factors however small that may have contributed to the development and maintenance of CFS/ME. It is not helpful to challenge participants beliefs at this stage, as it is likely to anger or frustrate them which may make it more difficult for a positive therapeutic relationship to be established

[titusLcarus]

It is important that you gain the participants agreement to work within the

CBT framework collaboratively with you over the next few months. It is more useful to try and broaden, rather than challenge, their illness attributions. These days mos people acknowledge that even for conditions such as cancer, heart disease or diabetes, social, emotional, cognitive and behavioural factors play a part in causation and/or prognosis.

[titusLcarus]

Being in receipt of benefits or income protection (IP)

If this is something that has not already been addressed, it is important to address it at this stage. People with CFS/ME are sometimes very keen to come off benefits and it does not cause them too many problems, maybe because they have another source of income. However, it can raise a lot of issues for other people and can be a source of great anxiety.

[titusLcarus]

Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them.

[titusLcarus]

In reality, benefits and IP can help patients financially in the short—term, but prove to be an obstacle to getting better in the long term. In order for benefits or IP to continue, patients have to have regular check-ups in order to prove that they are still ill. This can understandably be very distressing for patients and be an active factor in maintaining their condition.

[titusLcarus]

For some patients, returning to work can be very frightening as it may have been a major contributing factor to them becoming ill in the first place. . For more information on work related issues, please see Appendix 20. There is also a section in the participants' manual on work, courses and resources that you may ask them to read.

[titusLcarus]

Participants may feel trapped by their benefits, i.e. some benefits will stop being paid if they earn more than £20.00 a week. Participants may find the prospect of stopping benefits and working the number of hours required to earn more than their benefits would pay quite daunting.

[titusLcarus]

They can also be very fearful that if they come off benefits and have a relapse, they will not be able to receive benefits again. It is therefore useful to spend time discussing their fears and discuss different options. If they are keen to come off their benefits, it is useful to discuss steps to be taken to increase their ability

to work, e.g. by doing some voluntary work, or ‘permitted work'. ‘

[WhelkDoctor1]

@titusLcarus Please could you give an example of what sort of work Lynn Gilderdale could have attempted?

[titusLcarus]

IP

For participants who are in receipt of IP, it can be worth discussing the advantages and disadvantages of being on it.

[titusLcarus]

For participants who feel clear that they do not wish to return to that job, it may be useful for them to discuss the possibility of resettlement options with their employer. For participants who wish to return to their previous job, but feel unable to work the hours that they used to do, you could suggest that they discuss a graded return to work, or part-time work.

[titusLcarus]

For participants considering a return to work it is helpful to suggest that they build up their stamina and confidence in their ability to work again, e.g. by doing some voluntary work., For participants who want to leave their job, it is worth discussing different options with them and getting them to look at different alternatives for homework. . `