Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page & ask qns

[geraldt52]

I have trouble reading so much text on the computer. Is there a way to print out all the questions with Dr. Hornig's answers as one "document"? If so, could someone maybe make a link to it?

 

[halcyon]

I have trouble reading so much text on the computer. Is there a way to print out all the questions with Dr. Hornig's answers as one "document"? If so, could someone maybe make a link to it?

If you go here you can see all of her answers. If you click on the 'context' link under each, you can see just the question and her answer.

 

[Soundthealarm21]

I'd love to read some literature. However, it is an effective therapy. I mean, I was asleep and in bed basically ever day before I went in and now I'm out and about every day. The major cause of conditions like CFS is something called Central Sensitization Syndrome- you can google scholar it if you like and you'll find plenty of articles on it. It's essentially a descriptor for the fact that nerves can become over sensitive to certain inputs. People feeling extreme pain at the lightest touch for example.

The most current treatment for CSS is CBT. CBT is used because it allows doctors to set up programs that retrain your nerves. I don't remember if I said it before- I am not cured. I still have symptoms and pain. But my quality of life is 100% better and I feel like a new person, because they gave me the tools to manage my symptoms well.

Can someone help me out with a decent response. Anyone have any links to studies showing CBT and GET are not effective therapies?

The only thing I can think to respond to this person is that we don't have the same disease.

 

[Bob]

Can someone help me out with a decent response. Anyone have any links to studies showing CBT and GET are not effective therapies?

The only thing I can think to respond to this person is that we don't have the same disease.

The PACE trial is the largest study that has tested CBT for ME/CFS, and only 11-13% of patients responded to treatment with CBT (and that's a minimum clinical response - not a recovery) for the self-report outcomes. But CBT failed to improve objectively measured disability on various measures. So perhaps you could just say that CBT isn't an effective treatment, based on this evidence? He's not saying he's recovered - he's still got symptoms. And if he's found something that's helped him manage his symptoms, then that's great. Many folk have got a pet theory about what causes ME/CFS, especially if they've been helped by a specific treatment - but CFS is heterogeneous. What helps one person might harm another.

 

[Bob]

@Soundthealarm21 I've edited my previous post, because I posted something that I subsequently decided wasn't helpful. Please could you refresh your browser.

 

[Soundthealarm21]

The PACE trial is the largest study that has tested CBT for ME/CFS, and only 11-13% of patients responded to treatment with CBT (and that a minimum clinical response - not a recovery) for the self-report outcomes. But CBT failed to improve objectively measured disability. So perhaps you could just say that CBT isn't an effective treatment, based on this evidence? He's not saying he's recovered - he's still got symptoms - if he's found something that's helped him manage his symptoms, then that's great.

http://www.ncbi.nlm.nih.gov/pubmed/23363640

This seems to be patting itself on the back with the pace trial and CBT/GET though. I'm pretty sure there have been articles that dissected the results and found things such as the definition of recovery were skewed. If you know where to find those I'd be grateful.

As for your updated post just now. I'm not trying to tell this person that what he's doing isn't helping him, but what I do want to demonstrate is that the quote "However, it is an effective therapy" is incorrect.

 

[Bob]

I'm not trying to tell this person that what he's doing isn't helping him, but what I do want to demonstrate is that the quote "However, it is an effective therapy" is incorrect.

Yep, that's the best approach. We can't tell people that something hasn't helped them, when they say it has helped them.

This seems to be patting itself on the back with the pace trial and CBT/GET though. I'm pretty sure there have been articles that dissected the results and found things such as the definition of recovery. If you know where to find those I'd be grateful.

can't think of any concise summaries about the PACE trial. Critiques tend to be long-winded and technical.
I wonder if anyone else can think of any.

 

[Soundthealarm21]

Yep, that's the best approach. We can't tell people that something hasn't helped them, when they say it has helped them.


can't think of any concise summaries about the PACE trial. Critiques tend to be long-winded and technical.
I wonder if anyone else can think of any.

Cheers for taking a look at my comment Bob! I'll just use the numbers you gave me about the PACE trial and CBT

 

[SOC]

I'd go with something like:

Central Sensitization Syndrome is not equivalent to ME/CFS. There is an overlap in symptoms, which may be confusing some people into thinking CSS = ME/CFS, but the diagnosis criteria for ME/CFS under any definition includes more than CSS. (Include additional symptoms or diagnosis criteria, especially PEM, if you think it will educate anyone)

There is no scientific basis for the claim, "The major cause of conditions like CFS is something called Central Sensitization Syndrome..." [my bolding]. We don't know the cause of ME/CFS. There's certainly no evidence the cause is CSS. The best we could say in that regard is that some patients with ME/CFS may have CSS or symptoms similar to CSS as part of their condition.

Glad you found a treatment for your CSS that improves your quality of life.... yadda, yadda, yadda.

NB: He may be falling for the outdated hypothesis that fibromyalgia = ME/CFS. I think (I'm not sure) that there is some evidence fibro is a form of CSS.

 

[Soundthealarm21]

@SOC @Bob

I went with this:

Central Sensitization Syndrome is not equivalent to ME/CFS. There is an overlap in symptoms, which may be confusing some people into thinking they're the same, but the diagnosis criteria for ME/CFS under any of the 10+ definitions of it include more than CSS. The main cardinal symptom being post exertional malaise, or the worsening of symptoms upon exertion.

There is no scientific basis for this claim:

The major cause of conditions like CFS is something called Central Sensitization Syndrome

I can say that with certainty because because we don't even know what the cause of CFS is. We have some ideas and theories, but as of yet no concrete studies to prove one way or the other. There could be and probably are multiple causes for the same disease.

We might be able to say that some people with CFS have CSS or symptoms similar to CSS as part of their condition.

The PACE trial is the largest study that has tested CBT for ME/CFS, and only 11-13% of patients responded to treatment with CBT (and that's a minimum clinical response - not a recovery) for the self-report outcomes. But CBT failed to improve objectively measured disability on various measures.

I'm happy you've found something that has helped with your suffering and I hope it can continue to make you feel better and improve your quality of life.

Thanks for your help. After my busy day yesterday i'm utterly drained and brain dead today!

 

[Bob]

To make them easier to read and print, we've collated all the Questions and Answers from the Reddit session, and created an easy-to-view format.

There are two links below. One takes you to a simple webpage where the Q&As can be viewed/printed, and the other link takes you to a google doc that can be viewed/printed or downloaded in various formats (e.g. word or PDF).

Webpage:
https://docs.google.com/document/d/1GzZn9MjBWnt9TQqNy0lYZBvU_XWgWMg7DYZAypeDm_A/pub

Google document:
https://docs.google.com/document/d/1GzZn9MjBWnt9TQqNy0lYZBvU_XWgWMg7DYZAypeDm_A/edit?usp=sharing

 

[Valentijn]

Can someone help me out with a decent response. Anyone have any links to studies showing CBT and GET are not effective therapies?

The Nijmegen trials using actometers have proven that there's no increase in physical activity despite better responses on questionnaires. Every trial using actometers has shown that CBT and GET are a failure.

 

[A.B.]

Can someone help me out with a decent response. Anyone have any links to studies showing CBT and GET are not effective therapies?

The only thing I can think to respond to this person is that we don't have the same disease.

The burden of proof is on the person claiming that CBT and GET are effective. The studies so far have failed to demonstrate that it can actually increase physical activity and fitness, or restore ability to work. The improvements are limited to self rated fatigue and similar parameters, which is problematic because the goal of CBT is to change how patients view their symptoms, and also due to the placebo effect.

I'm pretty sure all definitions of CFS require a substantial reduction in the ability to work or function. It's not a disease of "mental barriers".