What exactly *is* the biopsychosocial model of ME ? (Poll included)

[Kati]

Anyone remember when, years ago, we had The Church of False Illness Beliefs" here?

It was part of a rolicking thread that explored such fascinating topics as whether pole dancing helped OI

How could I not remember? I changed my religion because of that
(From pastafarianism which is a serious upgrade for my spiritual life)

 

[JaimeS]

The Reverse Therapy therapist that @sueami used I think works though Skype (see @sueami's blog articles here and here), so that should be something you can do while still in bed.

I read it, and felt a little bad about the "scathing criticisms" she states she experienced at PR. I don't doubt it, in a way, because we are very gun-shy in the face of 'mind-body' treatments, but I don't like that she stated that she didn't know better than to believe 'strangers on the internet'. Everyone is responsible for his or her own decisions.

The overactivation of the SNS was certainly an issue for me -- heart palps, etc at the beginning of illness. But things that relax me knock me backwards; I feel like I'm depending on adrenaline to exist. Then there was that recent study where they gave ME patients adrenaline-blockers (anti-anxiety meds)... and their activity levels dropped, not rose.

[Edit: "I have no desire to argue with other CFS suffers about whether I had chronic fatigue or whether I really recovered. My first posts at Phoenix Rising about my recovery taught me what response I might expect."

Ohhhh, no one knew who she was when she first posted that she'd recovered?

Suddenly I see why/how people reacted with violent opposition.]

-J

 

[daisybell]

@Hip I find it slightly strange that you are suggesting Reverse therapy as something that @wolfita could try. Have you ever tried it yourself? I have.

I think that Mickel reverse therapy can potentially be a useful tool for someone who struggles to say 'no' and feels that they want to improve the balance of their life - in terms of looking after their own needs and being in tune with themselves, but i also think that you could spend a significant amount of money for little or no benefit. If you are really stressed, it can perhaps help you to identify stressors and deal with them more effectively, but IMO it is not going to cure you of ME. Perhaps if you are one of those lucky people who go into remission, having reverse therapy may help you get there faster.... I wouldn't recommend it myself except as a tool for anxiety/stress management, and perhaps for giving yourself 'permission' to put your own needs and feelings first.

 

[Wolfiness]

@Hip I don't have viral symptoms so I'm more of the Goldstein persuasion, neurological dysregulation.

The Mickel therapist I approached once was also selling blue-green algae on his website which suggested that he was either a fool or a charlatan. I have enough experience now that I don't think these approaches are likely to work for me. It's academic because I'm a whisker away from the very severest form of ME and I can't even manage appointments via Skype any more or short conversations with my parents so for me I'm afraid it's proper f*cking drugs or GTFO . I'm not really looking for an answer, if someone discovers one great but the best thing for me now in any interpretation of this disease is to stop looking for an answer which just isn't there at the moment and make my peace with this existence. (I don't mean suicide.)

Thank you to everyone who's given their time and energy in this thread. I will reread it properly in the coming days. x

 

[wastwater]

After watching that trudie video I seriously thought we need to be kinder to these people they have got some serious delusional beliefs.

 

[Hip]

@Hip I find it slightly strange that you are suggesting Reverse therapy as something that @wolfita could try. Have you ever tried it yourself? I have.

It is @wolfita, not me, who is exploring the possibility that she may have some "occult anxiety process I cannot consciously perceive."

Thus I pointed her to the story of @sueami whose sessions with a Reverse Therapy therapist were able to uncover some habitual learned mental tensions she had, and when she addressed these with the help of her therapist, her ME/CFS symptoms were hugely improved. @WoolPippi said she also had major benefits from Reverse Therapy.

I should expect that with therapists, there will be a great difference from one to the next. I would think that a good therapist would have to have a lot of empathy, because they need to get into you mind and figure out what, in your particular case, is causing the stress. That is not any easy task.

If you are really stressed, it can perhaps help you to identify stressors and deal with them more effectively, but IMO it is not going to cure you of ME.

I should think for most patients, you will be right, because I think in the vast majority of ME/CFS patients there are no psychological factors playing a role in their disease, or preventing viral clearance. There many be other physical factors preventing viral clearance, but not psychological ones. That's my view.

However, my hunch is that there could be the occasional patient in whom psychological factors such as a learned stress response is affecting physiology, and in these rare cases, addressing the learned stress response may help ME/CFS. But that is just hunch, because we really don't have any good data on this, just occasional anecdotes.

@Hip I don't have viral symptoms so I'm more of the Goldstein persuasion, neurological dysregulation.

Could you explain what you mean when you say "viral symptoms"? My ME/CFS appeared to be triggered by a virus, so I consider all my symptoms to be viral, either direct or indirectly.

If you mean the flu-like symptoms that some patients get during PEM are the "viral symptoms," most patients I believe do not get those anyway.

 

[Wolfiness]

It is @wolfita, not me, who is exploring the possibility that she may have some "occult anxiety process I cannot consciously perceive."

Well, I'm not exploring it, AFAIC I am, unlike @sueami, entirely aware of what causes me stress (and just scored 'Excellent' on Lyn White's Bodymind questionnaire… ), I'm just bugged by the "you must be stressed because you have CFS and CFS is caused by stress" circular bull. I think at best it's symptom not cause.

Could you explain what you mean when you say "viral symptoms"? My ME/CFS appeared to be triggered by a virus, so I consider all my symptoms to be viral, either direct or indirectly.

If you mean the flu-like symptoms that some patients get during PEM are the "viral symptoms," most patients I believe do not get those anyway.

Yes I did mean those, plus my fatigue started in childhood and became mildly disabling at 13 with my first period, and there was no viral trigger then. I got PVF after EBV at 17 but it improved. There was no viral trigger when I got really ill at 19, as far as I know, I just ran out of juice. It just doesn't feel to me like I have a virus.

Also what I said in response to your post in this thread:

Http://forums.phoenixrising.me/inde...dr-charles-shepherd.44675/page-11#post-727499

 

[Hip]

my fatigue started in childhood

You may well have contracted an infection in childhood that you have forgotten about; I certainly cannot remember all the occasions that I was sick with some bug as a child.

I don't believe in the occult ongoing virus theory.

You mean you do not believe that a virus can explain your own ME/CFS, or you don't believe in viral etiologies in general? Have you been tested for chronic active infection with all the usual ME/CFS-associated viruses, such as coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6 and parvovirus B19 ?

This is usually the first step any decent ME/CFS doctor will take.

I am ... entirely aware of what causes me stress

But I also have what is probably an irrational belief that some occult anxiety process I cannot consciously perceive is damaging me.

So you are saying that you know what leads to you to feel stress, but you also think you might have some deep down internal mental tensions that you are not aware of?

 

[GreyOwl]

So you are saying that you know what leads to you to feel stress, but you also think you might have some deep down internal mental tensions that you are not aware of?

I think @wolfita is saying that the process of being doubted for long has caused her to doubt her own mind and her experience of her reality, and that she is concerned that this causes her a level of anxiety she would not otherwise experience. It is a remarkable omission in the BPS theories, considering its proponents believe themselves to be insightful.

 

[Wolfiness]

No, Hip, I think I don't have any deep down internal mental tensions that I'm not aware of, but by definition I can't prove that. I know what anxiety feels like and I know what it doesn't feel like. I do not suppress things. I rarely feel anxious and when I do I know about it unlike all the people who give testimonials for all the I Was Really Stressed All Along And Didn't Know It treatments, but there are people who think that ME is the result of constant subclinical anxiety and will take my having ME as proof of constant subclinical anxiety. I think it's just wiredness. For "occult anxiety process" read wiredness. I'm going to try and sleep now.

 

[Hip]

I'm confused!

 

[Wolfiness]

I guess I'm saying people mistake wiredness for anxiety.

 

[Hip]

I think it's just wiredness. For "occult anxiety process" read wiredness

OK, if that is what you mean by anxiety, that puts a different light on it.

As someone who suffered from both severe generalized anxiety disorder (GAD) and the "wired" hyper-aroused state of ME/CFS, I did have a sense that these were related, and I think they may be both underpinned by excess extracellular glutamate.

But they are also very different, in that severe GAD is hellish; there is a great deal of torturous suffering involved with severe GAD. Whereas the wired state is more along the lines of being over-stimulated by drinking too much coffee; that's annoying and may keep you awake; but it could not be described as torturous in my experience.

Have you tried N-acetyl-cysteine for the wired state? This was mentioned on this thread: Four Ways To Reduce Your ME/CFS "Wired But Tired" Hyperaroused Brain State.

 

[Art Vandelay]

This indicates that the BPS model was not intended to be a scientific one, but rather a political tool.

As PJ O'Rourke said: "Politics is the business of getting power and privilege without possessing merit."

Those in the BPS school don't appear to have any merit or ability as scientists, researchers or as doctors. As we all know, they are incompetent and amateurish researchers and, while they may have initially gone into their field to help people, I bet they haven't cured a single patient. (That being said, psychiatry in general has a pretty bad track record when it comes to curing people.)

What they are good at, however, is lobbying. They continually shift their narrative to dodge and deflect criticism and scrutiny and to impress gullible bureaucrats and politicians. All this ensures that they gain power, prestige and access to taxpayer funds for their little empires.


Edit: while I remember, here's another example of a pseudo-scientific school of thought that gained prominence due to political patronage: https://en.wikipedia.org/wiki/Lysenkoism