Pro-CBT blog people here might like.

[Esther12]

I was just reading a generally pro-CBT blog which sounded like it was reciting a lot of things I here from people here about CBT for CFS.

CBT and failure: http://cbtish.wordpress.com/2010/06/22/failure/

"A typical scenario is when someone you live with is mentally ill, but you are not. For example, if your mother has a personality disorder, it might make you depressed. But your depression is not an illness because it is a direct and normal reaction to your circumstances. The best your therapist can do is point out that you are not ill but your mother is. Your therapist cannot treat your mother by remote control through you.

Formulation also fails when there is a physical illness presenting as a mental illness. Typical examples are thyroid gland dysfunction and chronic fatigue syndrome (CFS, also known as ME), both of which can present as depression. In the case of thyroid dysfunction the condition is usually treatable by a doctor. In the case of CFS the condition is often untreatable, although the symptoms can often be managed very successfully, and CBT techniques may be helpful to reduce elements of genuine depression."

CBT not CBT:

http://cbtish.wordpress.com/2008/10/08/cbt-not-cbt/

"One of the controversial treatments is graded exercise therapy (GET), a purely behavioural technique with no cognitive element. GET seems to help some patients, but it can cause severe relapse in others. I wont go into detail here about the pros and cons, how to determine who can be helped and who might be damaged, and how to make GET safe. The problem is that some patients who receive GET (and are possibly damaged by it) are told that they are having CBT, and end up confused about the difference.

CBT is a purely psychological therapy that cant possibly cure CFS (although it can help with the depression that is one of the common symptoms associated with CFS). Telling patients that they are having CBT when they are really only having GET deters those patients from having real CBT for their depression."

I'm not sure what the qualifications of the individual are, and I wasn't that amazed by what was written, but thought it might be of interest to some people here.

 

[eric_s]

No offence meant but i don't know why i would read something with that topic. I think it's outrageous to not be able to give people a treatment that works and therefore leave them with CBT.

 

[WillowJ]

I think it's outrageous to not be able to give people a treatment that works and therefore leave them with CBT.

I totally agree.

By the way, CBT is cognitive behavioural therapy. By definition, it seeks to change one's behaviour (not merely one's thinking/psyche), often including activity level, so it often (though not always) includes a GET component when used for CFS. The better type would use pacing instead of GET, but you can't tell by the title "CBT" what the aim of the behavioural intervention is.

 

[eric_s]

Yeah, and why want to mess with someone's psyche/behaviour (that is more or less the most private and taboo thing, to me) that has an untreated physical illness? This idea is just insane and also respectless.

 

[Esther12]

With the 'CBT and failure' bit they were talking about when CBT is inappropriate. So CBT can help some patients with feelings of depression and anxiety related to their illness, but if no distorted thoughts are found, therapy stops. The writer used CFS as an example of when that may happen... a patient is referred to CBT because it's believed they'd benefit from some psychological help, but when their thoughts are examined it's found that they're behaving reasonably in a difficult situation. Sounds sensible to me.

Sometimes we don't have therapies that help, and in that situation some patients may benefit from psychological help. I certainly wish all health problems could be effectively treated, but that's just not the case.

 

[eric_s]

Yes, but the problem is, that from what i've heard and read, CBT is mostly not advertised for as a treatment for psychological problems that someone with ME/CFS might also have, as anyone else, but as a treatment for ME/CFS.

And it's true that at this moment we don't have a treatment that reliably helps most of the patients (as far as i'm aware), but tell me any other disease, where they put so much effort into pushing something like CBT and so little into finding the cause and a treatment that adresses that cause. I would have far less problems with these things if we had a treatment, like there is for most other illnesses. And i guess in this case the percentage of PWC that suffer psychologically would be dramatically lower. So for me it's clear in what direction researchers, government officials and doctors should push. And that's not CBT. Help people get better and they will find it much easier to cope with their condition. Instead of leaving them sick and then use those methods on them. And as long as it's not done in this way, i think it's good to speak out against that approach.

Some people with ME/CFS need to be explained by a doctor or someone else that it's important to pace themselves and maybe taught how to do so, but that should not be "psychologized". If you learn how to drive a car they don't call it CBT either.

But ok, probably in a way it's not fair what i've said, because those articles you have posted have a different approach. I just feel like in the situation we are in, we have to push these things back, to send a message.

 

[justy]

Hi Esther, yes its interesting bec ause of course if you are having a normal reaction to an abnormal situation then CBT will not help to treat that situation. Infact for me it is a little bit more complicated than that. I developed Agoraphobia a year and a half ago, after a severe reaction to an SSRI antidepressant.
I have infact had M.E for 16 years with a long remission in the middle of this time period, but was only diagnosed a year ago. So the doc thinks im depressed - i know im not, but fearing the bedridden illness i had had years before and never quite recovered from i decide that as i dont have any other diagnosis he must be right.
I take the antidepressants. Within 24 hours i go from being physically unwell with some mild anxiety to svere suicidal ideation, depersonalisation etc. This carries on for about 8 months even though i only ever took 2 doses of the SSRI. I also develop agoraphobia as i feel so weird whenever i try to go out or drive or go to work etc. I have panic attacks when i push myself to do these things.
Before getting the M.E diagnosis i have 6 sessions of CBT. The problem is that when we look at my irrational thoughts about going out alone, we discover that i am actually physically very unwell and therefore my agoraphobia is a reaction to not being able to cope.
I finally get a diagnosis (of M.E) after some Mito testing etc with Dr.Myhill which my GP then agrees with. Now i am left with M.E AND agoraphobia. I am improving slowly after much resting, pacing, supplements etc bt the problem is that the treatment available for Agoraphobia in the UK is CBT and every time i look at why i cant do things alone it is because of a REAL fear not an imagined one. Yes i know that most PWME dont develop agoraphobia so i know i still have some work to do on getting over it, but as it is MAINLY a rational response to my illness its hard to see how even CBT can help.
Sorry to rant on, but it seemed a pertinent point.
Also Eric mentionms that with proper treatment thier may not be so much anxiety and depression with this illness and i believe that to be true. After all if i hadnt been treated innapropriately and left with no diagnosis for 15 years then i dont thionk i would have ended up either as physically or as mentally unwell as i have been or am now.

 

[paddygirl]

Ssri

Hi Justy,

Just a quick question, you mention the medication tipping you into a depressed state.

I'm very curious to know what the medication was. Not sure if Amyltriptyline (sp) is an SSRI but I had a catastrophic reaction to it. I was like a child locked in a dark cellar for months on end. It culminated in a week on my sofa drifting in and out of sleep and seriously frightening my family.

They all assumed immediately it was straightforward depression and exhaustion, as for years I've been getting up at 4.30-5.00 am for work and this was during a rotten winter which is my worst time.

Eventually it wore off and I had stopped taking those meds and just stuck with Tramadol.

Months later, a colleague with ME/FM suggested I tried Amyltrip again and I did so that night. I woke up with most awful feeling of dread and anxiety. Thats when the penny dropped and I saw the connection.

Can You tell me what you were taking? I've tried all the usual and don't do well on them.

I've often wondered since if the suicide rate in ME/FM is linked with the meds prescribed. My doctor and specialist get annoyed when I won't take them and roll their eyes when I say I can't tolerate them.

As to the agoraphobia, I started smoking heavily during this time and haven't been able to quit. I think to be honest it could just as well have been alcohol or some other prop. It's obvious to me that if someone's capacity for living is severely diminished, and they are completely unsupported, they will as humans do, falter.

 

[taniaaust1]

What I find outrageous is the over attention CBT gets as after all, its only good for "possibly" curing ONE symptom of the 90 or so we may have with the CFS/ME eg depression.

Its no more or less relevent then using panadol if you are getting headaches with the ME.

I'd love to see EACH ONE of our symptoms getting the same amount of attention depression in some ME patients get!

Too many CBT and psych. studies have been done (getting us basically no where), now we need to get some balance by NO MORE PSYCH. STUDIES. Where's the balance, 10 years of mostly psych studies.. now we need at least 7 years of studies on the other of our symptoms to balance things.

 

[SOC]

I'll say up front that I do not believe CBT is a cure or even a treatment for ME/CFS.

That said, the right therapist doing the right kind of CBT can be very helpful for many people with ME/CFS.

Case in point: My local clinic had (briefly) a former military psychologist on staff. She was a relatively young woman with children at home, who terminated her promising military career because she had severe RA which made it difficult for her to fulfill all her life obligations. She ran a therapy group for people with chronic illnesses. The goal was to help them understand their life situation clearly and get the most out of their lives. She did help them change their thinking and behaviour in ways that improved their quality of life. Some of it was getting past denial, other times it was learning to manage their limitations. At no point did she ever suggest that anyone's illness wasn't real. She knew very well from her own illness (and the injuries of the soldiers she treated in the army) that psychology can't treat an illness or injury. Her CBT was valuable to many people with chronic illness. Unfortunately, the clinic lost her to a VA hospital which paid her better.

 

[WillowJ]

ya, I agree that most of what we deal with mentally is a rational response to the challenges we face, and much of this could be removed by providing actual support and interventions.

and what little coping methods need to be taught, can be taught in some way other than from someone trained in Freud. Truly I like and respect Dr. Lenny Jason, and a few others, but many psychs I have no use for. Learning coping from someone else with a debilitating disease (as in Sickofcfs's example) makes more sense. I would much rather call this "support therapy" than CBT.

 

[IamME]

But your depression is not an illness because it is a direct and normal reaction to your circumstances. The best your therapist can do is point out that you are not ill but your mother is. Your therapist cannot treat your mother by remote control through you.

[...] chronic fatigue syndrome (CFS, also known as ME), both of which can present as depression. [...] In the case of CFS the condition is often untreatable, although the symptoms can often be managed very successfully, and CBT techniques may be helpful to reduce elements of genuine depression."

From that piece... it contradicts itself and it's completely wrong to say that CFS (meaning ME) can "present as depression" (or that it's "treatable"). Or more elaborately, the element of CFS which allows ME to be misdiagnosed is why we want to get rid of the toxic garbage of "CFS".

The contradiction is that the therapist is not allowed to remotely treat your mother through your reactive depression which is "not an illness", whereas with "CFS" the different rule is that the therapist can treat your CFS symptoms remotely through treating your depression which is now oddly "genuine" depression, or maybe despite it being "genuine" or not.

It's just another biased misinformed peice traying to sound reasonable by getting facts wrong about ME and CFS and thus making them a reasonable "exception" to its otherwise logic.

The things that pwME want addressed are 90%+ nothing to do with depressive symptoms, and in fact any such depressive symptoms (still a small % of the many organic symptoms) are secondary to the severe and untreatable, largely uncontrollable organic non-depressive symtoms.

 

[IamME]

The problem is that when we look at my irrational thoughts about going out alone, we discover that i am actually physically very unwell and therefore my agoraphobia is a reaction to not being able to cope. [...] Now i am left with M.E AND agoraphobia. I am improving slowly after much resting, pacing, supplements etc bt the problem is that the treatment available for Agoraphobia in the UK is CBT and every time i look at why i cant do things alone it is because of a REAL fear not an imagined one. ... Yes i know that most PWME dont develop agoraphobia so i know i still have some work to do on getting over it, but as it is MAINLY a rational response to my illness its hard to see how even CBT can help.

I'm having trouble deciding if your logic there is (slowly) moving in the right direction or not. I think it is, just, but your terminology is still screwed up. I just don't understand why you still want to hold onto an "agorophobia" diagnosis when BY DEFINITION a phobia must be IRRATIONAL. You say most pwME don't develop agorophobia, but how would you distinguish the 25% of housebound sufferers from your "not irrational but still is" agorophobia?

Every time you reaffirm that you have agorophobia, rather than a rational respect for your limitations, you give more power to the psychologisers who insist the only reason sufferers can become housebound is because of an irrational fear or "fear avoidance". That crap has to be 100% stamped on as it's very damaging. If you don't think you have an irrational fear of leaving the house then don't call it agorophobia!

I don't think "agorophobia" is like "anorexia" or "photophobia" in that they do have applications outside the common "irrational" perception (though they still might not be the best words to use depdning on the context).

 

[SOC]

ya, I agree that most of what we deal with mentally is a rational response to the challenges we face, and much of this could be removed by providing actual support and interventions.

and what little coping methods need to be taught, can be taught in some way other than from someone trained in Freud. Truly I like and respect Dr. Lenny Jason, and a few others, but many psychs I have no use for. Learning coping from someone else with a debilitating disease (as in Sickofcfs's example) makes more sense. I would much rather call this "support therapy" than CBT.

Not all psychologists are Freudians. CBT began, in a way, as a rebellion against Freudian-type psychoanalysis. You might find it interesting to read up on CBT a bit.

I think CBT has been claimed as a "cure" for many conditions to which it can't truly be applied. I also think many therapists and counselors, who are not trained clinical psychologists, misunderstand and misapply CBT. They do some weird magical thinking thing that goes something like, "If you stop believing in it, it will go away." That's moronic, IMO, but it happens a lot. I suspect the UK NHS is guilty of a lot of that kind of "therapy".

Frankly, CBT never did me much good, not because it has no value, but because I didn't need help in learning to cope, or in clarifying what I'm thinking or expecting. I already have the skills I need to cope with serious chronic illness. Not everyone does. Few people do, probably...just like few people have the skills to cope well with the sudden death of a loved one.

We can call it support therapy if you like, but it's still CBT. I'll agree that CBT has received a bad rap from being misapplied by poor practitioners. I'd turn and run (PEM be d@mned) from anyone offering me CBT as a legitimate treatment for ME/CFS. Can it improve the quality of life for SOME PWCs? Probably. Can it change anything about our physical symptoms? Not a chance, IMO. But there's no need to throw out the baby with the bathwater.

GET, on the other hand, I just don't, uh, get.

 

[WillowJ]

isn't that kind of the same thing as I said, only in different words?

 

[SOC]

isn't that kind of the same thing as I said, only in different words?

Probably. No doubt I'm not thinking as clearly as I'd like here at the end of a long day.

 

[Snow Leopard]

I'm very curious to know what the medication was. Not sure if Amyltriptyline (sp) is an SSRI but I had a catastrophic reaction to it. I was like a child locked in a dark cellar for months on end. It culminated in a week on my sofa drifting in and out of sleep and seriously frightening my family.

Amitriptyline is an older tricyclic antidepressant. (works as a Serotoninnorepinephrine reuptake inhibitor).

Side effects with doses over 25mg can include severe hypotension (as in you can't stand up, or you'll pass out).

 

[justy]

Hi Justy,

Just a quick question, you mention the medication tipping you into a depressed state.

I'm very curious to know what the medication was. Not sure if Amyltriptyline (sp) is an SSRI but I had a catastrophic reaction to it. I was like a child locked in a dark cellar for months on end. It culminated in a week on my sofa drifting in and out of sleep and seriously frightening my family.

They all assumed immediately it was straightforward depression and exhaustion, as for years I've been getting up at 4.30-5.00 am for work and this was during a rotten winter which is my worst time.

Eventually it wore off and I had stopped taking those meds and just stuck with Tramadol.

Months later, a colleague with ME/FM suggested I tried Amyltrip again and I did so that night. I woke up with most awful feeling of dread and anxiety. Thats when the penny dropped and I saw the connection.

Can You tell me what you were taking? I've tried all the usual and don't do well on them.

I've often wondered since if the suicide rate in ME/FM is linked with the meds prescribed. My doctor and specialist get annoyed when I won't take them and roll their eyes when I say I can't tolerate them.

As to the agoraphobia, I started smoking heavily during this time and haven't been able to quit. I think to be honest it could just as well have been alcohol or some other prop. It's obvious to me that if someone's capacity for living is severely diminished, and they are completely unsupported, they will as humans do, falter.

Hi Paddygirl. The SSRI was Citalopram. i think its called something else in the states. Im sorry that you had a bad experience with Anti D's as well. The problem was that i wasnt even depressed when i took them, just a bit anxious. Citalopram is supposed to have less side effects re anxiety, but i was tipped into a living hell for at least 8 months on only 2 pills. I have heard of others without M.E who have had this reaction to SSRI's and some who have taken years to recover, many ending up housebound, and yet they give them out like sweeties to all and sundry without a thought.

 

[justy]

I'm having trouble deciding if your logic there is (slowly) moving in the right direction or not. I think it is, just, but your terminology is still screwed up. I just don't understand why you still want to hold onto an "agorophobia" diagnosis when BY DEFINITION a phobia must be IRRATIONAL. You say most pwME don't develop agorophobia, but how would you distinguish the 25% of housebound sufferers from your "not irrational but still is" agorophobia?

Every time you reaffirm that you have agorophobia, rather than a rational respect for your limitations, you give more power to the psychologisers who insist the only reason sufferers can become housebound is because of an irrational fear or "fear avoidance". That crap has to be 100% stamped on as it's very damaging. If you don't think you have an irrational fear of leaving the house then don't call it agorophobia!

I don't think "agorophobia" is like "anorexia" or "photophobia" in that they do have applications outside the common "irrational" perception (though they still might not be the best words to use depdning on the context).

Sorry, but i think your thinking is also a bit wrong here. I have never said that i dont have agoraphobia, but that in my case it is of a strangely reactive type. I can go out and drive about once or twice a week, even if i am pretty worn out. I can even go into the supermarket and wonder around. But i cannot do it alone as i sometimes have panic attacks that are brought on by noise, lights, feeling exhausted etc. and sometimes i cant carry the shopping or have to leave it and sit in the car, then my friend or husband has to drive home as i feel i cant manage. This has set up a fear that is not entirely rational of going out alone, but it has some rationl basis.
I am not suggesting for one minute that other housebound PWME have agoraphobia or irrational fears.
As an example. The other day i had a full blown panic attack at the corner of my drive, when out for a short walk. I knew i was having a bad day as i was very exhausted nd had very blurred vision and headaches, eye pain etc, all the usual, but i decided to have my very short walk anyway as i feeel it is good for me to keep leaving the house and get 10 minutes of gentle walking. I knew i shouldnt really have gone, but i did, so i panicked when i realised that the house felt so far away (i could still see it) I got home o.k with my heart hammering and gulping for air and shaking. This was not entirely rational as i have never collapsed outside and needed rescuing. On the other hand i clearly wasnt well enough to attempt the walk.
I know it may seem strange, but its my version of M.E. and it makes it very difficult for me to reciev treatment for the agoraphobia. I keep hoping that as my M.E improves the ability to handle being out alone will improve also.
BTW your post felt a little harsh, sorry if ive got that wrong, but i did think we where here to support each other.

 

[Esther12]

It's quite normal for people who have had a serious medical problem to go on to develop hypochondria. Reasonable fears can become exaggerated and then self-perpetuating.

To a certain extent, I think we can all develop unreasonable fear based on a once reasonable habit. We had fleas from our neighbors cat, and it was a total nightmare. Since then I am now more worried about having animals about, and feel more of a fear response to the idea of things biting me (mosquitoes, etc).

If Justy's health problems give her more legitimate fear about going outside, that doesn't mean she cannot also have developed unreasonable fears too. There is a real grey are here... how concerned about mosquitoes would I need to be before it counted as a psychological problem? If I can hear one buzzing round my room, then I would get up to hunt it down rather than go to sleep. But I don't worry about going outside in the summer, or keeping windows open. Bug bites are irritating... how much trouble is it worth going through to avoid it? For now, I think it would be nuts for me to go to see a CBT therapist about this one!

PS: I quite agree with everyone that the way CBT has dominated CFS research funding is a big problem. I got the impression that the writer of the blog would agree.