Disappointing reply from Mayo, need help with response - Cochrane Review?

[Mary]

I received the e-mail below and accompanying document from the Mayo Clinic a day or 2 ago. I looked at it rather quickly, they have made some positive changes but it still has some glaring inaccuracies, the worst being their continuing reliance on GET and CBT, based on the Cochrane Review, and also a strange analogy comparing PEM to being allergic to something! I haven't had the energy to look at it in depth yet.

I know I am out of my depth as regards the Cochrane Review. I've seen it mentioned several times here but I'm not up on its flaws (though I gather they are many) or anything else about it (I don't really know what the Cochrane Review actually is) nor how to rebut its use by the Mayo Clinic.

So I'd appreciate input for a reply to Mayo. My energy is limited so I'm requesting that replies be kept brief and to the point - I don't want to wade through discussions or debates or opinions, etc. - just the facts, ma'am! (as Joe Friday would say). (e.g., the Cochrane Database of Systematic Reviews re Exercise Therapy for Chronic Fatigue Syndrome is fatally flawed because _______________________, or however this could be better worded)

And anything else anyone thinks is pertinent, I'd appreciate.

I have some things I have to get done in the next couple of days so I probably won't be able to devote any real time to this until next week, though I will check in. So if I don't reply right way, don't worry, I will.

e-mail:

Each story on MayoClinic.org is updated every three years. I’ve attached the Word document that contains the latest revisions to our online article about chronic fatigue syndrome, complete with the bibliography that shows the sources cited for each paragraph. This text is in the process of being published online, but I don’t know exactly when that will occur.

I worked closely with one of Mayo’s experts on this topic, to determine the best wording for each section. I made several changes specific to points raised in your letter. However, we still believe that most evidence indicates that cognitive behavioral therapy and graded exercise are the best treatment options available at this time for people with chronic fatigue syndrome.

 

[Esther12]

Thanks for pushing them on this.

Cochrane are the major problem we face at the moment. Maybe they'd be a good focus for this years Millions Missing protest?

Did you point out the comments attached to the Cochrane exercise review, and the dire responses from Larun? I expect that their 'expert' will have been promoting CBT & GET over the years too, so will not want to back-track now.

 

[Mary]

Did you point out the comments attached to the Cochrane exercise review, and the dire responses from Larun? I expect that their 'expert' will have been promoting CBT & GET over the years too, so will not want to back-track now.

No, this is exactly the kind of thing I'm trying to find out. Where are these comments? do you have an accessible link? When I went to the review page (http://onlinelibrary.wiley.com/wol1/doi/10.1002/14651858.CD003200.pub7/full) it won't let me look at the article.

 

[Esther12]

No, this is exactly the kind of thing I'm trying to find out. Where are these comments? do you have an accessible link? When I went to the review page (http://onlinelibrary.wiley.com/wol1/doi/10.1002/14651858.CD003200.pub7/full) it won't let me look at the article.

The full review is online here: https://www.dropbox.com/s/koehut6iw2bm9v5/Larun_et_al-2017-The_Cochrane_Library.pdf?dl=0

p117/141 has Kindlon's first comment, and his are followed by a number from Robert Courtney.

 

[Mary]

The full review is online here: https://www.dropbox.com/s/koehut6iw2bm9v5/Larun_et_al-2017-The_Cochrane_Library.pdf?dl=0

p117/141 has Kindlon's first comment, and his are followed by a number from Robert Courtney.

Thank you!

 

[Mary]

@Tom Kindlon - The Mayo Clinic is citing the Cochrane database as part of its rationale for prescribing GET and CBT for ME/CFS. You of course have written a very detailed analysis of its flaws.

I'm corresponding with Mayo, and would like to rebut their reliance on Cochrane (among other things). Would it be possible for you to summarize in a few sentences the chief problems with Cochrane, which I would then submit to Mayo?

And anyone else reading this, any other input would be appreciated - thanks so much!

 

[Tom Kindlon]

@Tom Kindlon - The Mayo Clinic is citing the Cochrane database as part of its rationale for prescribing GET and CBT for ME/CFS. You of course have written a very detailed analysis of its flaws.

I'm corresponding with Mayo, and would like to rebut their reliance on Cochrane (among other things). Would it be possible for you to summarize in a few sentences the chief problems with Cochrane, which I would then submit to Mayo?

And anyone else reading this, any other input would be appreciated - thanks so much!

I'm not going to take this on at this time. Best of luck.

 

[Learner1]

@Mary I read through the Mayo document and didn't find it too bad UNTIL it got to tests and treatment.

IF, as they say, its possible that ME/CFS is linked to viruses and immune dysfunction, would it not make sense, then, to test for these??

Many of us have had success with:

- testing for herpes family infections and atypical pneumoniae, mold, and other infectious agents, then treating what is found with antivirals, antifungals, antibiotics, etc.

- testing for immunodeficiencies and treating them with LDN, IVIG, etc.

- testing for auto antibodies using Mayo's own PAVAL panel, the CellTend test and other antibodies and treating them with IVIG, Rituximab (and possibly immunosuppressants)

- and, as recommended on the CDC site, testing for and treating nutrient deficiencies

They can do CBT and GET all they want but unless the above serious health problems are addressed, no one can talk or exercise their way back to health.

There are many scientific articles that support the above which I've been collecting... PM me if you're interested.

Thanks for taking on this cause.

I'm still waiting to hear back on round 3 with Healthwise....

 

[Esther12]

I don't think that there is good evidence for any treatments for CFS. It would be a bad idea to promote something experimental like Rituximab right now, as this would distract from concerns about the evidence base for CBT and GET.

re a summary of problems with Cochrane:

The comments submitted on the exercise review do a pretty good job of detailing a lot of the specifics imo.

The common problem is that the trials included routinely rely on subjective self-report outcomes that are prone to bias in nonblinded trials. This paper talks about this issue specifically with relation to PACE, but the problem is widespread with the included trials: http://journals.sagepub.com/doi/full/10.1177/1359105317700885

 

[Mary]

@Mary I read through the Mayo document and didn't find it too bad UNTIL it got to tests and treatment.

IF, as they say, its possible that ME/CFS is linked to viruses and immune dysfunction, would it not make sense, then, to test for these??

Many of us have had success with:

- testing for herpes family infections and atypical pneumoniae, mold, and other infectious agents, then treating what is found with antivirals, antifungals, antibiotics, etc.

- testing for immunodeficiencies and treating them with LDN, IVIG, etc.

- testing for auto antibodies using Mayo's own PAVAL panel, the CellTend test and other antibodies and treating them with IVIG, Rituximab (and possibly immunosuppressants)

- and, as recommended on the CDC site, testing for and treating nutrient deficiencies

They can do CBT and GET all they want but unless the above serious health problems are addressed, no one can talk or exercise their way back to health.

There are many scientific articles that support the above which I've been collecting... PM me if you're interested.

Thanks for taking on this cause.

I'm still waiting to hear back on round 3 with Healthwise....

I'm aware of all these things although I have not heard of anyone who has ME/CFS making a full recovery after being treated for various viruses, etc. I've read that people make improvements with antiviral therapy and ldn etc., but the fundamental thing that is wrong never seems to get resolved.

When I first contacted the Mayo Clinic about their website, I included several links about research showing verifiable abnormalities in persons with ME/CFS - and they have chosen to ignore them in favor of promoting GET and CBT. I don't have the energy or inclination to argue all possible testing and treatments. I'm just going for the broad outlines. They should be able to fill in the blanks if they have a good starting point. And they obviously don't when they are denying that PEM, which is the hallmark of ME/CFS, even exists. If they had a clue what PEM was all about, they would not be promoting GET and CBT, and might even be interested in finding out what was actually going on.

So that's all I have the energy to focus on now, the issues of PEM and GET and CBT, and hoping (probably futilely) to get them to take a second look. They are proposing positive changes to their website, but are ignoring the elephant in the room ---

 

[Mary]

I don't think that there is good evidence for any treatments for CFS. It would be a bad idea to promote something experimental like Rituximab right now, as this would distract from concerns about the evidence base for CBT and GET.

re a summary of problems with Cochrane:

The comments submitted on the exercise review do a pretty good job of detailing a lot of the specifics imo.

The common problem is that the trials included routinely rely on subjective self-report outcomes that are prone to bias in nonblinded trials. This paper talks about this issue specifically with relation to PACE, but the problem is widespread with the included trials: http://journals.sagepub.com/doi/full/10.1177/1359105317700885

Thank you @Esther12! I'll give it a go next week when I have more time and energy. I did look at the comments, briefly, but it was rather overwhelming and I did not want to devote a lot of time and energy to try to synthesize them. You've given me a very good foundation to begin with and I'll just wing it from here

 

[Neunistiva]

@Mary Unfortunately I know very little about this, but I do remember reading this in tribunal verdict on page 21:

"Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

 

[Learner1]

I'm aware of all these things although I have not heard of anyone who has ME/CFS making a full recovery after being treated for various viruses, etc. I've read that people make improvements with antiviral therapy and ldn etc., but the fundamental thing that is wrong never seems to get resolved.

When I first contacted the Mayo Clinic about their website, I included several links about research showing verifiable abnormalities in persons with ME/CFS - and they have chosen to ignore them in favor of promoting GET and CBT. I don't have the energy or inclination to argue all possible testing and treatments. I'm just going for the broad outlines. They should be able to fill in the blanks if they have a good starting point. And they obviously don't when they are denying that PEM, which is the hallmark of ME/CFS, even exists. If they had a clue what PEM was all about, they would not be promoting GET and CBT, and might even be interested in finding out what was actually going on.

So that's all I have the energy to focus on now, the issues of PEM and GET and CBT, and hoping (probably futilely) to get them to take a second look. They are proposing positive changes to their website, but are ignoring the elephant in the room ---

@Mary Thank you once again for doing this. I hear what you're saying and how hard it is to fight a battle like this with limited energy.

However, having recently battled my health insurance with 2 appeals for immune system treatment AND had my LTD insurance pestering and threatening me for the past year and having me recently submit to an independent medical examination, I can tell you the stakes are much bigger.

If we don't even know to get tested for real medical problems and don't know there are potential treatments and our doctors don't either, there's no path to wellness.

And our insurance can keep trying to deny us treatment and benefits.

CBT and GET haven't cured any more patients than antivirals, B12 and other supplements, thyroid, IVIG, or Rituximab.

They are something to try, but they do nothing for a serious underlying medical problem, which many of us have.

If you don't feel up to it, can you share where we can send letters to, so we can help you win them over?

Thanks again for your good efforts!

 

[Mary]

@Mary Unfortunately I know very little about this, but I do remember reading this in tribunal verdict on page 21:

"Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

Thank you so much! I will definitely include this information in my reply to Mayo

 

[Mary]

@Learner1

However, having recently battled my health insurance with 2 appeals for immune system treatment AND had my LTD insurance pestering and threatening me for the past year and having me recently submit to an independent medical examination, I can tell you the stakes are much bigger.

If we don't even know to get tested for real medical problems and don't know there are potential treatments and our doctors don't either, there's no path to wellness.

And our insurance can keep trying to deny us treatment and benefits.

CBT and GET haven't cured any more patients than antivirals, B12 and other supplements, thyroid, IVIG, or Rituximab.

They are something to try, but they do nothing for a serious underlying medical problem, which many of us have.

If you don't feel up to it, can you share where we can send letters to, so we can help you win them over?

Thanks again for your good efforts!

Hi @Learner1 - Actually I would say that CBT and GET have not cured [I]any[/I] patients and GET in particular has made many much worse - it's causing very serious harm, besides deflecting any attempt to deal with our very real physical issues.

And I know the stakes are huge - I've lost 19 years of my life to this illness, so far --

I've been extremely fortunate in getting the ear of someone at the Mayo Clinic who is directly involved with the content of their website. I don't want to jeopardize this contact, so I'm not publishing their name or contact information without their consent. So I'll e-mail them and if they say okay, I'll pass on their contact information to you. And if they don't want me to do this, I'm willing to pass on what you send me to them.

 

[Learner1]

Hi @Learner1 - Actually I would say that CBT and GET have not cured [I]any[/I] patients and GET in particular has made many much worse - it's causing very serious harm, besides deflecting any attempt to deal with our very real physical issues.

Seems to be the case alright!
[QUOTE]
And I know the stakes are huge - I've lost 19 years of my life to this illness, so far --
[/QUOTE]
I didn't mean to be impertinent. I have the greatest respect for how you're attacking all of this...

Its just so frustrating that almost everywhere we turn, the deck is stacked against us. We are all in a fight for our quality of life, our dignity, and our ability to be normal. I've been struck by how easy my battle with stage 3 cancer was, with all the supports of society in place, and then being treated like an outcast with this disease.

There are glimmers of hope at this point in time. We're likely 10-30 years before all the science is perfect. But it doesn't mean we shouldn't be able to try. I've seen cancer patients in very bad shape given all kinds of experimental treatments, many of which didn't even work. Its amazing that this disease, which affects in the prime of life only merits psychiatric treatment and an exercise program which further depletes resources.
[QUOTE]
I've been extremely fortunate in getting the ear of someone at the Mayo Clinic who is directly involved with the content of their website. I don't want to jeopardize this contact, so I'm not publishing their name or contact information without their consent. So I'll e-mail them and if they say okay, I'll pass on their contact information to you. And if they don't want me to do this, I'm willing to pass on what you send me to them.[/QUOTE]
That makes sense - keep up the good work! And thank you for your efforts!

 

[Learner1]

@Mary Is there anything here you can use? Its from Peter Rowe's talk on OI/POTS at the event in the UK.

There was also another speaker who showed results of depleted resources in the body after GET.

 

[Neunistiva]

@Mary Here is a pdf version of Journal of Health Psychology special issue on PACE trial https://www.dropbox.com/s/42pka6etu...h Psychology special issue pre-print.pdf?dl=0

If you have energy, you can make a quick search for "Cochrane" in there.

A user over at reddit suggested you contact James Coyne and ask for his advice.

 

[Esther12]

@Mary Here is a pdf version of Journal of Health Psychology special issue on PACE trial https://www.dropbox.com/s/42pka6etuh6fmbl/Journal of Health Psychology special issue pre-print.pdf?dl=0

If you have energy, you can make a quick search for "Cochrane" in there.

A user over at reddit suggested you contact James Coyne and ask for his advice.

From what I remember, 'Cochrane' tends to just be used by those wanting to appeal to their authority in the promotion of GET, and evade addressing the specifics of the problems with the research underlying their claims.

 

[Mary]

@Mary Here is a pdf version of Journal of Health Psychology special issue on PACE trial https://www.dropbox.com/s/42pka6etuh6fmbl/Journal of Health Psychology special issue pre-print.pdf?dl=0

If you have energy, you can make a quick search for "Cochrane" in there.

A user over at reddit suggested you contact James Coyne and ask for his advice.

Okay - I may give that a try next week - thanks again!