A Response to Professor Fred Friedberg’s Editorial about CBT

[JaimeS]

That aligns with most of the comments on the petition that Jo linked to. I had no idea about that aspect of it. People also claim that it's cookbook medicine: requires you to fill out a dozen forms, follow very rigid rules, when a therapist's effectiveness depends on flexibility since all patients are not alike. Very bureaucratic process too, apparently.

 

[Barry53]

The protocol for CFS aside, there is controversy among Psychology practitioners about CBT and concerns that it's over-rated. There's debate in the profession as to whether CBT is more effective than placebo and petitions like this one, set up by the Alliance for Counselling & Psychotherapy: supporting diversity, responsibility, autonomy and innovation in the psychological therapies, to NICE (not connected with CFS or ME) - http://www.ipetitions.com/petition/stop_nice-iapt_bias/

This response at the above link, by Emily Morris, is very telling:-

"Really good therapists are being denied the chance to work effectively because of this ridiculous one size fits all approach. People with complex needs are expected to 'recover' in six weeks and therapists are put under pressure to achieve 50% recovery rate outcomes which is unrealistic at best and at worst leads to unethical manipulation of clients to ensure that their test scores improve. The compassion is being sucked out of the service and excellent practitioners are being wasted."

That rings so true.

 

[Barry53]

Which is likely just to alienate the people (the clinicians) he's trying to reach.

Quite so. Although it is important to say what has to be said, there are usually better ways of doing it than alienating (i.e. seriously p'sing off) the people it would be really good to have on your side. Not always possibly, but usually a good thing to aim for.

 

[Andrew]

This thread aroused my curiosity, and so I read the whole article.

Overall, I see it as a pro-patient article. What he says is that patients are very resistant to accepting CBT for good reason. First, their experiences shows they have a real illness. Second, the actual research results for improvement have been inflated by people citing the research. For example, most patients had no improvement, and some got worse. Also, the research itself is not even well done. It uses words like "recovery" were the patient was still seriously ill. And there is no objective before-and-after measure in some studies. And the ones that did use objective measures found no meaningful reduction of disability, even among patients who subjectively reported they were doing better. And he offers some reasons for this. But he concludes that if doctors educate themselves in supportive techniques, they can help patients have better lives despite being sick.

 

[Kati]

For what it's worth, here is my opinion:

There is a huge imbalance between biomedicine and psychological medicine when it comes to ME. Patient shave been burnt more than once. Until biomedicine takes over and finds biomarkers, FDA-approved treatments, and provides a way to makes these accessible to all through medical education and perhaps a medical specialty, psych therapy will remain a politically acceptable treatment for ME to the detriment of biomedicine.

One needs to understand the political context, involving less costs for society and less cost for insurance companies as a driver to continue supporting these 'treatments'.

Fred Friedberg receives ample grants to continue exploring CBT as a valid treatment for patients with ME. He needs to include this as a declared conflict of interest when writing in journals.

 

[trishrhymes]

There seems to be a trend in the psych. papers being flagged up here in PR. Lots of stuff about how they can refine their CBT so it's more effective at 'helping' us. Signs perhaps that they've noticed it doesn't work, and they are desperate to cling on to a lucrative income stream. And to justify their careers.

 

[Barry53]

There seems to be a trend in the psych. papers being flagged up here in PR. Lots of stuff about how they can refine their CBT so it's more effective at 'helping' us. Signs perhaps that they've noticed it doesn't work, and they are desperate to cling on to a lucrative income stream. And to justify their careers.

And to salvage their egos.

Unfortunately all this tends to obscure the fact, that there are a great many genuine, dedicated professionals within psychiatry, who really do help a lot of people. It seems the lunatics have taken over the asylum .

 

[JaimeS]

Fred Friedberg receives ample grants to continue exploring CBT as a valid treatment for patients with ME. He needs to include this as a declared conflict of interest when writing in journals.

Do other researchers have to say "I'm researching cancer, but I also take grant money to try treatments for cancer"?

It's important to us that he studies CBT, but I don't know that others would consider it sinister per se, or a conflict of interest to write about what you research!

 

[Snow Leopard]

One key factor in the "vilification" of CBT is that it comes down to trust.

There is a loss of trust in the researchers (due to spin) and practitioners (who lack experience and/or understanding of the science).

When CBT is sold, not as a way of dealing with a difficult life due to a chronic illness, but instead as some sort of magic medicine that will make our symptoms go away, patients are going to lose trust.

 

[Kati]

Do other researchers have to say "I'm researching cancer, but I also take grant money to try treatments for cancer"?

It's important to us that he studies CBT, but I don't know that others would consider it sinister per se, or a conflict of interest to write about what you research!

Wouldn't you like to know, as a new patient, as a parent of a child with ME, that Peter White is the main author ofthe PACE trial which is widely discredited by now?

Indeed, it is not a crime to receive funding to research CBT for ME patients. However we all know that coping is not going to cure, and that the influence of psychiatry in ME has made it so that a large majority of the physicians (and grant reviewers) still believe that ME is a mental illness treated with psych therapy?

In Canada for our Millions Missing Campaign, our slogan was Stop the Harm* Start the research * Start the treatments*. We have also had a grant for research turned down because the grant reviewer felt it was a mental illness.

Until there is more biological proofs that indeed this is a biological illness, all CBT clinical trials aiming at more functioning or rehabilitation or even 'living better with ME' will continue to harm the biomedical research.

Edit to add: in Canada, socialized medicine makes it so that provincial and national programs get built based on the current evidence. It means that in my area, what is offered for ME is group therapy. The website for the program claims that patients are so pleased with the program (just like PACE trial newsletter really)- and the wait list for this award winning CBT group therapy is like 3 years long. They are not allowed to prescribe drugs like LDN because it is off-label. So until CBT and GET gets out of the Cochrane reviews, this is the kind of treatment we will get here in my corner ofthe country.

 

[JaimeS]

We have also had a grant for research turned down because the grant reviewer felt it was a mental illness.

I knowwww I wrote the article. That... *expletive expletive*.

And your point is taken. I just really wish that the rules for other illnesses applied to us, but sometimes it's comparing apples and oranges.

Regarding your comment elsewhere @Kati I am definitely going to the conference this October! I appreciate your efforts. <3

-J

 

[Kati]

I knowwww I wrote the article. That... *expletive expletive*.

And your point is taken. I just really wish that the rules for other illnesses applied to us, but sometimes it's comparing apples and oranges.

Regarding your comment elsewhere @Kati I am definitely going to the conference this October! I appreciate your efforts. <3

-J

(Off-topic, sorry)

@JaimeS

Glad you are going and should you be able to tweet or post updates,
I will avidely look out for these posts.

Have a good trip and sending energy to go through all the sessions you want to attend.

 

[JaimeS]

TY! Going to try that 'aggressive resting' beforehand.

 

[Andrew]

Well, there is an even more fundamental problem than doctors not understanding it. They are being told that it treats ME/CFS. They should be told that it does not treat ME/CFS, but when applied in a supportive way it it help patients adjust to dealing with having a chronic illness.

As for psychiatrists, when I was first diagnosed by my primary, I mentioned it to my psychiatrist. And to test the water, I asked if he can do anything to help. He said CFS is not a psychiatric problem. He said I need to see an internist. And a couple years later I asked him if he could prescribe Luvox (an SSRI) because I read a small study where it helped with ME/CFS. He handed me 30 days worth of samples so I could test it. It didn't help, btw. And I also consulted with a second psychiatrist (not about ME/CFS) but I did mention it in passing. And he also said it's not psychiatric.

So not all psychiatrists are against us. And remember, Leonard Jason is a professor of psychiatry, and he has been one of our most tenacious champions.

 

[Kati]

So not all psychiatrists are against us. And remember, Leonard Jason is a professor of psychiatry, and he has been one of our most tenacious champions.

Hi Andrew, dr Jason has a doctorate in psychology.
http://condor.depaul.edu/ljason/