Please post here if you're a medic who thinks CFS is primarily psychological!

[Jerry S]

Thanks, parvo. Your brilliant writings give me hope.

Best wishes,
Jerry

 

[starryeyes]

Parvo, I really appreciate your clear insights. Thank you.

 

[Esther12]

parvofighter:

"One of the reasons I come to this forum is because this is a community of patients who "get it"."

I come here mainly for XMRV news... But I've never liked the idea of spending my time getting information from people with similar beliefs to me - doing so can make us soft (I think that's one of the problems with the psychologisers). I'm a bit of a lefty, but get my news mainly from Fox News, The Economist, Daily Dish and Daily Mail - I don't want to only read the views of those who I think 'get it'. A healthy forum needs a wide range of beliefs to be presented for examination and discussion. I think that some people here are far too willing to jump down the throats of those they see as heretical, while ignoring the errors made by those they see as being on the right side. I don't think this is healthy.

"The last thing that seriously ill ME/CFS patients need is someone to plant the seed of doubt that this complex neuro-immune disease is all their fault; that the remitting/relapsing nature of this disease proves we're neurotic."

This is a reoccuring theme with me. Where-ever I go, I get in trouble for spreading doubt. On religious websites, atheist websites, political websites - here. I like doubt. I think we too easily slip into a misplaced confidence in our own beliefs, and a casual dismissal of these we disagree with. I try to avoid that, and remind myself of my uncertainties and the weaknesses of my own arguments. I understand that this can be unsettling and will use up energy - some people may think that it is better to avoid acknowledging their own doubts so that they can function more effectively. I'm not that interested in the 'functional' approach - I want to try to believe what's most likely to be true, and am quite willing to make sacrifices for this aim.

Generally, I'm willing to impose my doubt upon others, and don't think we have a right to avoid arguments and debate. But given that many people are seriously ill here, and lacking the normal resources for debate, self-criticism, etc, I try to be a little softer; make it clear that people do not need to respond and can ignore my comments. I think that the fact I sometimes feel an urge to self-censor so I don't get sucked into a pointless squabble is a bad thing for the forum (as well as a refelction of my own weakness).

I think that having CFS and engaging seriously with the debate about it's nature is especially difficult. I often feel like I'm trapped in a first year philosophy dilema (How do we know what we know?) but unable to take the usual dismissive and pragmatic way out because of the unknown cause of my illness. These emotional strains may well be best avoided, but I find myself drawn to the arguments because I'm interested in the truth and genuinely uncertain as to what that may be. I think that being able to have a serious and honest discussion with a proponent of the psychological view of CFS would be a helpful way of clarifying my own ideas. Currently I'm unable to take them seriously, and it would be great to be able to talk this over with them and see if 1) there really is nothing but quackery to thier beliefs or 2) they have some ideas which I've just been previously unable to understand or they've been unwilling to communicate clearly.

"You give the psycholobby too much credit if you believe they can brainwash us."

I said that I wasn't worried about it. I think someone else mentioned it.

"Your dismissal of forum members is palpable, as is your indifference to genuinely upsetting seriously ill patients. "

Others had raised concerns that any such discussion would just provide fodder to show how unreasonable we were, and I was saying that I did not think that need be the case.

I've read your post on the BMJ and thought it was very interesting. Thanks.

 

[serenity]

nothing & no one is going to convince me this is all in my head, they can psycho-babble all they want.

 

[Adam]

Esther said;

I think that having CFS and engaging seriously with the debate about it's nature is especially difficult. I often feel like I'm trapped in a first year philosophy dilema (How do we know what we know?) but unable to take the usual dismissive and pragmatic way out because of the unknown cause of my illness. These emotional strains may well be best avoided, but I find myself drawn to the arguments because I'm interested in the truth and genuinely uncertain as to what that may be.

I don't have this problem. Don't get me wrong, I've had the debate with myself often enough, what with all the 'normal' test results I had way back when. Hell, I mean, they say I'm fine so I must be musn't I? Then what happens is, I walk a few yards and somehow forget I don't walk at a normal speed anymore and then bang, I'm staggering around the best 10 pint drunk you ever saw. Then the debate is over. I don't know what made me this way. I do know it is not in my head and I see no point discussing it with anyone who thinks that it is.

Many thanks Parvo, Marten. Orla (I got to get back to your Liverpool Shrink thread and finish it) geez you are brave.

Esther, I guess you are well intentioned here, but I think ( and judging by the 'consensus' off the reponses, you are off base on this one.

 

[_Kim_]

Esther,

If you desire to engage in dialogue with a medic who thinks CFS is primarily psychological, why don't you email Simon Wessely? He has demonstrated a willingness to communicate with other members of the forum in the past, and if he HAS been reading our postings, he may even know your reputation for spreading doubt and be delighted to receive your correspondence.

 

[Orla]

What we are dealing with

See http://www.facebook.com/reqs.php#!/topic.php?uid=154801179671&topic=12698 for an example of how the psyche brigade operate. This is an extract:

I have to post here today because I have just witnessed the most blatant attempts to discredit WPI and their XMRV research work. In fact, the whole existence of the WPI was questioned.

I went to see a British doctor who is actively involved in areas of CFS research in the UK talk about "The Future of CFS/ME Research".

She spent 15 MINUTES on the subject of the WPI in which she said:

1. XMRV figures were exaggerated. To demonstrate this she showed original report with 67% XMRV positive statistic. Then she showed the statement where 95% was quoted and said WPI had made it up. (I did correct this later on, explaining that more samples had been tested).

2. The WPI "doesn't exist" in that the picture of the building is fake. The WPI are asking people to donate money for something that doesn't exist. (I felt it was also implied that the WPI were being deceptive around this issue.)

....for the rest see http://www.facebook.com/reqs.php#!/topic.php?uid=154801179671&topic=12698

 

[parvofighter]

Sorry - a clarification

Hi @Esther12

The "It" factor on these forums
Esther, perhaps I should have been more clear. One of the reasons I come to this forum is because this is a community of patients who get it. IT is that ME/CFS is not some one-dimensional, monochromatic, neurotic self-indulgence in somatization. Something the psycholobby has conveniently and impressively managed to ignore. " It" is the recognition that ME/CFS is a complex neuro-immune disease that requires understanding, research and biomedical care from many disciplines, including immunology, oncology, molecular biology, virology. And yes, psychology/psychiatry to cope with loss, and the indifference of the medical profession. THATs what I get here.

Differentiating Groupthink from a Community of Scientifically Enquiring Minds
It would be a puerile oversimplification of my words to say that I only come here for groupthink. Thats the domain of the psycholobby, in ME/CFS after all: just look at their track record. As I specifically stated, I find it stimulating that our community dont always see eye to eye on the science. But I have zero interest in discussing philosophy or metaphysics here at least not with the psycholobby (but maybe with the Church of False Illness Beliefs).:Retro smile:

Imposing doubt upon others
You made two important points in one sentence, and I want to do them justice by addressing them individually

Generally, I'm willing to impose my doubt upon others

I don't think any of us would challenge your courage in doing so! You've definitely got Chutzpah!

You also stated, however that you

don't think we have a right to avoid arguments and debate.

As a matter of fact, we do. I reserve the right to express my dismay at a topic that I believe to be manipulative. And I think youve seen here that we will stand up to any argument or debate that has a flimsy foundation in science and is emotionally disturbing for seriously ill patients with a devastating neuro-immune disease. It is a testimony to the strength of this community that time after time we DO tag-team and address inequity, manipulation, or plain flimsy science when we see it.

At the end of the day, it boils down to this: the ability to distinguish gratuitous doubt
foisted on a vulnerable population, from genuine scientific enquiry.
:Retro wink:
​

 

[Carrigon]

I come here mainly for XMRV news... But I've never liked the idea of spending my time getting information from people with similar beliefs to me - doing so can make us soft (I think that's one of the problems with the psychologisers). I'm a bit of a lefty, but get my news mainly from Fox News, The Economist, Daily Dish and Daily Mail - I don't want to only read the views of those who I think 'get it'. A healthy forum needs a wide range of beliefs to be presented for examination and discussion. I think that some people here are far too willing to jump down the throats of those they see as heretical, while ignoring the errors made by those they see as being on the right side. I don't think this is healthy.

Well, alot of us come to these forums for support for our VERY REAL symtoms and suffering. If you want a debate forum, i suggest you start your own debate forum elsewhere. Deliberately upsetting a bunch of very physically ill people and causing them undue stress is horrible. And there is no need or reason to do that here. The net is a very big place. Rather than suggesting that the members of this forum ignore you, which you seem to have done, why not go elsewhere and start your very own debate forum on the subject. There are plenty of free forums out there, wouldn't cost you a thing. And you don't need any tech knowlege to do so.

 

[Cort]

I just got a long post from someone who believes I have unqualified support for CBT and other behavioral therapies. Let me be VERY clear about my belief regarding CBT's efficacy"

• I believe it can help some people
• I do not believe it cures anyone with ME/CFS
• I believe that it does not work at all for a considerable percentage of CFS patients
• My experience with other behavioral therapies like the Amygdala retraining is that they are difficult, time consuming and have value that is limited. While my quality of life has improved they have not touched the core problems of my disorder; ie my ability to engage in physical activity
• I believe treatments such as these can very significantly help a small percentage of people, help somewhat (10-20%) a large percentage of people, and not help at all a considerable percentage of people. I do not believe they are a cure for CFS.
• I do not believe more study into CBT is warranted

I have tried to qualify my remarks numerous times regarding CBT. Its not a subject I would ordinarily comment on much. I have done recently to defend the CAA's ability to report on CBT's limited success. I'm not sure why that makes me a staunch advocate of CBT as a treatment for CFS. I don't think its a 'treatment' for CFS; I think its a coping mechanism/management tool. I'm hopeful that as researchers learn more about CFS and devise real treatments for it that it will completely fade away as an option. I'm simply, in general, trying to take an objective stance towards it - which is apparently not going over very well.

That includes recognizing CBT's limited effects for some people, its lack of effect for many others and its failure as a 'cure'.

I should probably just stay away from this subject because I don't think alot of people 'get' where I'm coming from. Its obvious from that email that a significant number of people don't.

I know that many people in the UK and elsewhere have been victimized by the medical establishments approach to CFS.

 

[Cort]

Some recent posts by me on this subject

http://www.forums.aboutmecfs.org/showthread.php?3040-CAA-is-Listening&p=58197#post58197

I really think you may be misinterpreting my posts. I'm sure there are some people who believe that any disagreement on these issues means I am for CBT or the Oxford definition. I am not for the Oxford Definition nor am I for CBT as an major treatment for CFS. I believe CBT was over represented in SPARKS and other treatments should have been given more prominence.

http://www.forums.aboutmecfs.org/showthread.php?3040-CAA-is-Listening&p=57487#post57487

I entirely support you and others that are upset with a document that features CBT in a such a way that it appears to be the only treatment for CFS and I recognize that that kind of document will inevitably, whatever the packet says, lead some physicians to believe this is a pscychological disorder and will impair patients chances for adequate treatment.

http://www.forums.aboutmecfs.org/showthread.php?3040-CAA-is-Listening&p=57457#post57457

CBT is here and its going to be here. My guess is that it'll be playing a more and more minor role in the treatment discussion I think the research community is realizing that it has definite limitations. Broad overviews of treatment studies are indicating that. In my overview of the Reno conference I noted that a CBT practitioner got up and said its been overhyped; she did not say it did not have some positive benefits for at least some patients.

I think the CFS community instead of wasting its time arguing that CBT does not help should spend its time arguing that it does not help ENOUGH. That we've spent 10 or 15 years studying it and we know its positive points and its negative points and its time to move on. That's the CAA's stance actually.

CBT needs to be put in the right context; a help that in no way results in a cure. The Sparks document doesn't say it does but it doesn't define its limitations within the overall context of disease severity well enough. That's my problem.

Basically we need more research into treatments that are more effective -that are really effective. That should be the focus, I believe, finding treatments that are really effective. The scientific community is not going to turn its back on CBT no matter how much patients scream. It can, however, modulate its approach and starting looking elsewhere.

When I see studies that do indicate some benefit I can't in all good conscience ignore them. All that means is that there is some benefit for some people. One overview said 40% and bear in mind that the benefit does not always need to be very large for it to be 'significant'. I think that's asking too much.

That's what I think we should focus on; that the benefits of CBT are not substantial enough, that we know what it can and cannot do, and that the research community should move on.

We should ask the CAA to illuminate more treatment areas - which they did with their physician education program they created with Dr. Bateman. I do not believe we should take them to task for mentioning whatever benefits CBT or other behavioral therapies ( and the energy envelope approach is ENTIRELY a behaviorally therapy) can bring. We can ask them to not feature it prominently - for sure.

[/QUOTE]

 

[_Kim_]

I believe treatments such as these can very significantly help a small percentage of people, help somewhat (10-20%) a large percentage of people, and not help at all a considerable percentage of people. I do not believe they are a cure for CFS.
[/LIST]

Cort,

I think I see why some people may be upset by your beliefs about CBT. You have missed the main argument that I have read over and over again by forum members.

Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

For a mere 10-20% chance of improvement
You risk 100% decline
​

 

[Cort]

OK I got it. I guess I'm more familiar with the Dr. Klimas, Dr. Jason form of CBT. Big warnings should be placed alongside CBT overviews that CBT practitioners that try to push patients through their symptoms are dangerous.

 

[Cort]

Here's a report on CBT: it more fits in with my understanding of how its currently practiced at least in the US. Please do not get the idea from my posting it here that I think it in any way is a cure for CFS. I'm just trying to point out my understanding of how its practiced now is that enlightened practitioners use it to skillfully manage activity - not push through symptoms.

I DO NOT agree with several parts of this document. I agree that there are some awful preconceptions in it. I do not in any way support them; in fact there were so painful that I've removed several of them... They were eye-opening for me in their arrogance.....I've never actually seen CBT therapy described.

There is no proven or reliable cure for CFS, and no drug has been developed specifically for this disorder. Because CFS remains poorly understood, many patients have problems finding good care. Overall, the recommended strategy for treatment includes a combination of the following:

• A healthy diet
• Antidepressant drugs in some cases, usually low-dose tricyclics
• Cognitive-behavioral therapy (CBT) and graded exercise for certain patients
• Medication
• Sleep management techniques
  

Cognitive-Behavioral Therapy

The Procedure. CBT is usually performed over 6 - 20 sessions, each lasting about an hour. Patients are also given homework, which usually includes keeping a diary and attempting tasks that they have avoided because of previous negative attitudes.

A typical cognitive therapy program may involve the following measures:

Keep a Diary. The patient is almost always asked to keep an energy diary, which can be a key component of CFS cognitive therapy. The diary serves as a general guide for setting limits and planning activities. The patient uses the diary to track any factors, such as a job or relationship, that may be making the fatigue worse or better. It is also used to track the times of day when energy levels are at their highest and lowest.
Adjust Schedule. The patient adjusts schedules to conform to energy peaks and valleys recorded in the diary. For instance, the patient may take a nap during low-energy times and plan important activities during high-energy times. Developing regular daily routines around probable energy spurts or drops may help establish a more predictable pattern.
Confront Negative or Discouraging Thoughts. Patients are taught to challenge and reverse negative beliefs (such as "I'm not good enough to control this disease, so I'm a total failure."), and to use coping statements ("Where is the evidence that I can control this disease?")
Be Flexible. Energy levels will most likely never be entirely predictable. Patients must be prepared to adapt to energy variations. Instead of taking a long nap, for instance, patients may need 5- to 10-minute rest periods every hour or more, possibly involving relaxation or meditation.
Set Limits. Limits are designed to keep both mental and physical stress within a manageable framework so that patients do not get discouraged by forcing themselves into situations in which they are likely to fail. For example, tasks are broken down into incremental steps and patients focus on one step at a time.
Prioritize. Patients learn to drop some of the less critical tasks or delegate them to others.
Manage Impaired Concentration. Patients seek out activities that are appealing, focus attention, and help increase alertness. They learn to request instructions given as concise, simple statements. External distractions, such as music or talking, are kept to a minimum.
Accept Relapses. Over-coping and accomplishing too much too soon can often cause a relapse of symptoms. Patients should respect these relapses and back off. They should not consider them a sign of treatment failure or personal failure.
Using both self-observation and specific tasks, patients gradually shift their fixed ideas that they are helpless against the fatigue that dominates their lives. They move to the perception that fatigue is only one negative experience among many positive ones.

Success Rates. One review of CFS trials reported that, of all therapies available to CFS patients, only cognitive behavioral therapy (CBT) and graded exercise showed conclusive benefits. CBT is effective at reducing the symptoms of fatigue compared with usual care, and it appears to be more effective than other psychological therapies. Although CBT doesn't bring patients completely back to normal, research has found that people who use the therapy have higher mental health scores, and are able to walk faster and with less fatigue than those who did not use CBT. - Whoopie Doo!!!Cognitive therapy may also be an effective treatment - a big no no. What is effectivefor adolescents with CFS. Young patients who received CBT have reported improvements in fatigue, functional status, and school attendance.

Not all studies support the benefits of cognitive therapy for CFS. It is important to note that different therapists may have different fundamental assumptions about CBT and may use different techniques. - YOUR point here. For instance, some therapists believe that CFS is a purely psychological problem and that patients must reject the notion of physical causes, abandon all reliance on assistive devices, and participate in challenging exercise programs. Other therapists do not attempt to change patients' underlying beliefs, but instead focus on helping patients conserve energy and better cope with the limitations of their illness. These are the ones I was thinking of - that I am more familiar with. When considering CBT, patients and their families must be aware of such important differences in therapists.

The power of the mind to improve or oppose health problems is significant, and treatments that promote a positive outlook are beneficial for any disease.

Mild stuff for this CBT practitioner but not for others. I understand your point. It can be dangerous in the wrong hands - something that should be noted - and have limited effects in good hands. Can we agree on that?

 

[_Kim_]

Mild stuff for this CBT practitioner but not for others. I understand your point. It can be dangerous in the wrong hands - something that should be noted - and have limited effects in good hands. Can we agree on that?

Almost.

It can be dangerous even in the right hands. There is no way to know if one more gradation in the exercise process will be the one to render you bedbound. Even if you having been making progress. Even if your CBT/GET therapist believes that your illness is not due to false illness beliefs. Even if you, yourself, think that it is helping.

 

[Esther12]

You also stated, however that you"don't think we have a right to avoid arguments and debate." As a matter of fact, we do. I reserve the right to express my dismay at a topic that I believe to be manipulative. And I think you’ve seen here that we will stand up to any argument or debate that has a flimsy foundation in science – and is emotionally disturbing for seriously ill patients with a devastating neuro-immune disease. It is a testimony to the strength of this community that time after time we DO tag-team and address inequity, manipulation, or plain flimsy science when we see it.

At the end of the day, it boils down to this: the ability to distinguish gratuitous doubt
foisted on a vulnerable population, from genuine scientific enquiry.
:Retro wink:
​

I think I may need a clarification too. By "don't think we have a right to avoid arguments and debate" I meant that I do not think that I, or anyone else, would be violating the rights of others by raising ideas and arguments that some may find distasteful. Of course, people can then respond to them however they choose.

I feel that I had already acknowledged some of the points you raise in the sentence right after the one you quoted: "But given that many people are seriously ill here, and lacking the normal resources for debate, self-criticism, etc, I try to be a little softer; make it clear that people do not need to respond and can ignore my comments"

There's nothing wrong with people 'attacking inequity, manipulation, or plain flimsy science' - I've never implied otherwise.

I don't know that ME/CFS is a complex neuro-immune disease. I'm not even sure what would be required to categorise it as such (and google was no help).

edit: I feel like this is in danger of becoming a squabble rather than a discussion. I don't know how much of the fault for that lies with me, or how much with you, but I don't feel as if we're really progressing much. I think that this is the sort of things that should be avoided.

PS: I had a quick search and couldn't find Wessely's e-mail. I suppose I could try e-mailing him - although I have to admit that I don't really want to.

 

[biophile]

Open "dialectic" discussion would be an excellent idea in ideal circumstances. However, such circumstances do not exist, so I agree with the posters who have explained the futility and risk of inviting it into this forum. There is a disconnect between what patients experience and what "psychologisers" believe. The latter are directly and indirectly responsible for a substantial proportion of the suffering endured by patients. Even if some psychologisers are pleasant and sincere, many others appear to be particularly feverish and spiteful about their opinions.

I doubt hard scientific evidence is not going to change their minds either (at least not all of them). Psychologisation is an ideology, a belief system, and even a "lifestyle" for some people. A few even psychologise diseases which are already accepted as organic to the medical profession. Psychologisation of CFS is not just about mere ignorance or a simple difference of opinion about the "available evidence", but many psychologisers appear to be driven by the desire to be in the position of issuing forth condescending "harsh reality checks" about psychological factors in neurotic patients with distorted views.

The psychological domain has some importance and should not be dismissed out of hand, but a strong belief in "mind over matter/body" has the potential to become a dangerous cognitive-bias. I have previously bought some stock into the biopsychosocial model and (to some extent) the psychologisation of CFS, with detrimental results. An alternative to Esther12's suggestion is to have the same debate amongst ourselves, as there are many CFS patients who accept an important role for psychological factors in disease. I think I would rather hear their side of the story.

 

[gracenote]

Here's a report on CBT: it more fits in with my understanding of how its currently practiced at least in the US. Please do not get the idea from my posting it here that I think it in any way is a cure for CFS. I'm just trying to point out my understanding of how its practiced now is that enlightened practitioners use it to skillfully manage activity - not push through symptoms.

I DO NOT agree with several parts of this document. I agree that there are some awful preconceptions in it. I do not in any way support them; in fact there were so painful that I've removed several of them... They were eye-opening for me in their arrogance.....I've never actually seen CBT therapy described.

Mild stuff for this CBT practitioner but not for others. I understand your point. It can be dangerous in the wrong hands - something that should be noted - and have limited effects in good hands. Can we agree on that?

Cort,

You've spent a lot of time trying to explain your position about CBT, and I respect you wanting to accept the studies that say it can help, but then you say things like "They were eye-opening for me in their arrogance.....I've never actually seen CBT therapy described."

So here are my suggestions before we continue this conversation about CBT (and GET as they are hopelessly entwined):

1. spend some time reading what the CBT studies actually say, what they "describe"

2. look into the CBT studies in the same way that we have been looking into the studies proving the lack of XMRV and see if they can stand that type of scrutiny (who are the cohorts, what is the particular protocol that is used, what are these "limited effects" you refer to, who are the "some people" being helped)

3. look into how an ME/CFS patient could possibly find these "enlightened practitioners" who won't end up being "dangerous"

4. look into what doctors are thinking when they refer a patient for CBT (what do they think CBT is, and what do they think it will help)​

Anyway, these are just some of my suggestions for now. I may have more later. I'll probably have more later.

gracenote :innocent1:

 

[Hope123]

I don't think this is a forum for rational discussion with the "primarily psychological" crowd. These folks can't even look at the evidence they come up with themselves in a straightforward manner. It always dismays me when I read a paper with interesting biomarkers for CFS by White, Wessely, etc. but they don't highlightit themselves in their interactions with scientists or media and as Orla alluded to in actions vs. words, I don't see them building upon their own findings. I don't know what type of thinking it takes to deny what is in front of you but it is not healthy.

Esther12, after coming across your posts so many times and not commenting on them, I've decided you do not pay attention to the posts of others. If you did, you would not write the posts you do.

 

[Lily]

I don't know that ME/CFS is a complex neuro-immune disease. I'm not even sure what would be required to categorise it as such (and google was no help).

This explains a lot. I think many of us on the forum have made an assumption, based on the frequency of your posts, that you read more here on the forums, including the many medical references available here than you actually do.

You might benefit from reading more of the medical information available. Have you perhaps thought of getting psychological help with your illness? I'm not being flip or sarcastic, I'm serious. That would perhaps give you an opportunity to have an honest conversation with someone who believes ME is a psychological illness. But if I were you, I'd become as educated as possible, first.

I know that you have made an attempt to temper the statements in your posts over the past few months because I've noticed a difference and wondered about it.

You're right about this thread probably turning into more of a squabble than anything else. I believe that your intentions were good, but am really surprised that you didn't foresee what would happen. I'm not surprised that you aren't aware of how lacking in empathy you seem to be. That's not a criticism of your character either, it's just an observation over the past months. You've grown on me over the months, Esther, but now as you have admitted, you have been holding back.

Please don't contact Wessely on our account. If you decide to talk with him do it because you want to. I am curious though as to why you wouldn't want to.