Article: Treatment the UK way - the ME Association's ME/CFS Treatment Survey

You can view the page at http://www.forums.aboutmecfs.org/content.php?255-Treatment-the-UK-way-the-ME-Associations-ME-CFS-Treatment-Survey

 

Excellent point about money, Cort. We have plenty of doctors here in the US who don't believe in or understand ME/CFS, too, but we're fortunate to have a small group of experts who you can see if you can afford it. There are certainly some exceptions - my own family doctor was the first to recognize I had CFS and she immediately began treating my sleep dysfunction (not with sedatives but by correcting it). She is also willing to learn about new treatments and willing to try them, as long as they don't seem too risky.

My sons' pediatrician has been wonderful, too. She knew nothing about pediatric CFS, but she's read everything I bring her and has spent hours on the phone with Dr. Rowe, learning how to treat OI, which has helped them immensely. I know we're lucky to have these two primary care doctors.

Hey, Cort - did you have any other information on how Immunovir fared in the survey? What percentage saw improvement or stayed the same?

Thanks -

Sue

www.livewithcfs.blogspot.com

 

You do have to bare in mind that although the lightning process is shown to be the most effective (though not that effective) treatment, its also the one which has probably cost the patient the most out of any of the surveyed treatments. When i looked into it i would have to pay for several of treatment and pay for the cost of living nearby as well, it worked out to be alot of money. I think anyone who has been on this has had to invest alot of money in it, and frankly would like to feel they had benefited at least somewhat from it. Psycologically, its preferable to say (and feel) like it had some value, rather than feeling that it had little or no value.

Im not saying the lightning process has no value, maybe it has, as I said I havent tried it, but I think its worth bearing in mind the psycological 'cost-desired benefit' factor here.

One of the things i did try was GET and the impact was horrendous.

One final point. As there is not yet a test for ME/CFS it seems likely to me that approx. 10% of us (those diagnosed with ME/CFS) actually have something else. So for me, I look at all of these reported improvements to be less than actualy reported when it comes to the appox. 90% of us with true ME/CFS.

Best Wishes
The Snow Athlete

 

Youtube videos Deconstructing Lightning Process

1:
http://www.youtube.com/watch?v=SFGcKmdOVO0


2:
http://www.youtube.com/watch?v=bDsc0-dJ640&feature=related


3:
http://www.youtube.com/watch?v=0UvfWW5IA1I&feature=related

 

At least we don't have to read in the papers or live in a society permeated by such a negative mindset - that is a huge stressor; these things can keep the mind whirling and upset, heart rate up, body in a state of tension - its brutal.

I'm not convinced that stress is a problem in the prolongation of the condition in many patients, at least those who aren't depressed (or other anxiety problems). It is merely a hypothesis, there is very little objective evidence to prove that it is the case.

 

You do have to bare in mind that although the lightning process is shown to be the most effective (though not that effective) treatment, its also the one which has probably cost the patient the most out of any of the surveyed treatments. When i looked into it i would have to pay for several of treatment and pay for the cost of living nearby as well, it worked out to be alot of money. I think anyone who has been on this has had to invest alot of money in it, and frankly would like to feel they had benefited at least somewhat from it. Psycologically, its preferable to say (and feel) like it had some value, rather than feeling that it had little or no value.

Im not saying the lightning process has no value, maybe it has, as I said I havent tried it, but I think its worth bearing in mind the psycological 'cost-desired benefit' factor here.

Good point. Anyone know what might be the technical term for that or could be used in that context. "Cost-desired benefit" is not it anyway given there are no results in Google for that phrase.

One of the things i did try was GET and the impact was horrendous.

Sorry to hear that.

One final point. As there is not yet a test for ME/CFS it seems likely to me that approx. 10% of us (those diagnosed with ME/CFS) actually have something else. So for me, I look at all of these reported improvements to be less than actualy reported when it comes to the appox. 90% of us with true ME/CFS.

Good point. Also to be more exact, one might think what might help somebody who had fatigue for another reason. Most are unlikely to be helped by immune therapies but some by other treatments e.g. if depressed, CBT might help.

 

You do have to bare in mind that although the lightning process is shown to be the most effective (though not that effective) treatment, its also the one which has probably cost the patient the most out of any of the surveyed treatments.

Going from 10c to $2.5 has quite a significant effect so imagine what going to $500 does
http://www.sciencedaily.com/releases/2008/03/080304173339.htm

 

Going from 10c to $2.5 has quite a significant effect so imagine what going to $500 does
http://www.sciencedaily.com/releases/2008/03/080304173339.htm

Thanks wdb. I wonder (aloud) is there any evidence in terms of time/effort invested in a treatment/placebo. I think people who have invested a lot of time/energy into a treatment might like to think it was worth it.

 

Thanks wdb. I wonder (aloud) is there any evidence in terms of time/effort invested in a treatment/placebo. I think people who have invested a lot of time/energy into a treatment might like to think it was worth it.

I think you're right. And not just the patients...

'Trainers' who have commited to some course and to trying to make a living out of it will also have ingrained all sorts of cognitive biases.

I think this causes a lot of trouble with systems of nonsense. People can claim that you need a lot of training to be able to really understand Islam/Catholicism/GET/LP/Freudian psychotherapy....

but going through that training then moves you into the 'in group', with powerful incentives against attacking what you've spent so much time learning about.

In science there's that famous quote about the evidence not changing people's minds, but changing what the next generation will be taught (sorry, I've garbled it).

 

I think you're right. And not just the patients...

'Trainers' who have commited to some course and to trying to make a living out of it will also have ingrained all sorts of cognitive biases.

I think this causes a lot of trouble with systems of nonsense. People can claim that you need a lot of training to be able to really understand Islam/Catholicism/GET/LP/Freudian psychotherapy....

but going through that training then moves you into the 'in group', with powerful incentives against attacking what you've spent so much time learning about.

In science there's that famous quote about the evidence not changing people's minds, but changing what the next generation will be taught (sorry, I've garbled it).

Interesting.

There's another quote I'll garble - it's something like: "It's hard to change somebody's mind when they are paid to think something else".

Just following on from your point, maybe meandering a little: I think lots of people think what they studied or do is very important - I think a lot of people are "glad" for whichever course they chose in college and rationalise to themselves that this is a good course to do, makes one a better person, or whatever. And some tend to inflate/overinflate the importance of their domain for society.

And meandering more, probably off-topic, I think people can justify lots of things: one might think, if I never did such a course or did such-and-such, I would never have met my friends or experienced whatever, so that can seem horrible and one is glad one made the choices one did. Of course, one probably would have met other people who one grew to like if one's life had take a different turn. Anyway, I think I'm going off-topic there but just something that occured to me.

 

Almost everyone thinks they're under-paid and under-appreciated!

Over the last decade or so what has probably always been a slightly silly cognitive distortion has become a lifestyle philosophy: "No regrets." Recognising that you've made mistakes now seems to be viewed as a weakness, while it's heroic to plow on believing that every decision you've made has turned out for the best.

I think you're also right to partly link this to the personal relationships people develop as a result of the decisions they've made. I recognise those thoughts in myself, but hadn't really examined them before. I'm sure there are lots of papers on stuff like this... I read some pop-psychology stuff (Steven Pinker etc) and I'm sure these sorts of things crop up, but I can't think of any clear examples now.

I think your point about people emphasising the importance of the subjects/knowledge they are most familiar with might also be true because our prior knowledge so affects the way we intergrate further information and develop our understanding of the world. If you know about economics then news reports will be understood in this context and it will feel as if anyone with a poor knowledge of economics will be unable to understand these stories. The same would be true for sociology, but perhaps with a very different perspective.

You're right though, this is getting OT.

 

Thanks wdb. I wonder (aloud) is there any evidence in terms of time/effort invested in a treatment/placebo. I think people who have invested a lot of time/energy into a treatment might like to think it was worth it.

Honestly I think you're grasping at straws. I paid way more than that for Dr. Cheney - $5,000 the first visit - and that availed me nothing. People have gone through tens of thousands of dollars and gone bankrupt funding efforts to get better and gotten nowhere. People spend thousands of dollars as a matter of course seeing any ME/CFS doctor. A group of people - after Mike's incredible recovery have spent months and months - some of them over a year living in Ohio - and lots of # and no one has come close to repeating Mike's recovery unfortunately....Why would paying alot of money not play a role there and then play a role at LP?

When I first got sick I really believed alot of doctors could help and none of them did - so thinking somebody can help doesn't make much of a difference either....the placebo effect only lasts so long

I think there is a bias, though, in that only certain types of people are drawn to try LP and there is some sort of filter the LP practitioners apply - they don't accept just anyone. So its a certain type of group.

Of course some of them are like everybody else - they've tried lots of stuff - it didn't work and they heard this might - so they'll give it a shot, no matter what it is. Look at all the people that tried CBT in that survey - almost 1,000 - people who are really sick will try almost anything. However, I'm sure there is some sort of extra bias because of that filter.

It will take alot more research to determine who does and who does not benefit from any type of treatment.

 

I was just extending the concept.

As you point out, there could be a particular subgroup who do LP.

Personally I have no faith in the LP survey results as I think I explained - they have been LPed=NLPed (a bit like hypnotized and not far off brain-washed) for three days. One of the things they are supposed to say is they don't have ME (or CFS) - they're not doing that anymore. They're like walking ads for the product.

But I think it is theoretically possible that the amount of effort (or money) put into a treatment could have an effect in what people report. How much of an effect, who knows.

 

I was just extending the concept.

As you point out, there could be a particular subgroup who do LP.

Personally I have no faith in the LP survey results as I think I explained - they have been LPed=NLPed (a bit like hypnotized and not far off brain-washed) for three days. One of the things they are supposed to say is they don't have ME (or CFS) - they're not doing that anymore. They're like walking ads for the product.

But I think it is theoretically possible that the amount of effort (or money) put into a treatment could have an effect in what people report. How much of an effect, who knows.

I don't see any reason to treat them any different from anyone else - with the exception that the questions LP requires a positive answer to constitute a filter that filters out some people and in others. Otherwise I don't see any reason to believe that they would stick with it for a lesser timespan than anyone else trying any of these other treatments? I would guess that most people who answered the survey spent the same amount of time with it as any other treatment.....

Obviously the 'LP effect' needs a great deal more characterization...including duration of effect....

 

I am in the minority here. I found my 6 sessions of CBT to be very helpful.



The NHS ME clinic and the CBT helped me to stop doing harmful behaviours and having thoughts which countered my body's attempts to feel better. They gave me the tools to know what works for me and what doesn't and the times of day that I am better than othersdoing certain activities, thus helping me to preserve my hard earned energy.

Can you be more specific and tell us what harmful behaviors and thoughts kept you sick?

 

If you or somebody can adjust the file sizes that can be put in the library (even temporarily), I'll upload one or two CBT manuals. For example, the CBT manual for therapists for the PACE Trial (4135KB) and the CBT manual for patients (3978KB). It has all the session plans, handouts, homework sheets, etc. One could see how bits of it could be useful to some patients especially patients who are fairly newly diagnosed. It isn't that "heavy" to read.

Will do - it'll be good (I think ) to learn what all the fuss is about. :Retro smile:

Let me know if it doesn't work.

Just a lil' reminder about this, Cort. I tried there but it says the limit is 2.86MB.

 

For heavens sake - do not follow the UK Way.

 

Just a lil' reminder about this, Cort. I tried there but it says the limit is 2.86MB.

Thanks I don't know why it does that actually. It should be wide open...

 

Just a lil' reminder about this, Cort. I tried there but it says the limit is 2.86MB.

Thanks I don't know why it does that actually. It should be wide open...

Tried again: no luck.
I'm not sure what you mean by "it should be wide open". I imagine there is always a limit in terms of what can be uploaded and it's up to the person running the forum to alter it as necessary. With the current limit, there could be other people who have tried to upload stuff but gave up (and maybe then gave up for doing other uploads also - there have been very few uploads to the library in recent months).