The P2P Draft Systematic Review Is Up

[Nielk]

People with absolutely no knowledge about ME/CFS doing an evidence based review based on flawed criteria (Oxford and Fukuda) are either delusional or clearly working for the system. And the system, the status quo or whatever you'd like to call it, is not coming to our rescue, is not working on behalf of PWME, is not moving science forward and out of the tainted and mired waters it has condemned million of very sick people to live.

Not only is the system broken but, many would say the process is fixed purposefully to fail is. It is HHS/NIH who chose this process and are guiding it purposefully to harmfully minimize and marginalized this disease.

Many stakeholders feel that our inly viable option is to boycott these procedures and to try to block it. We ought to show how there is no legitimacy to a process that is doomed from the start.

 

[NK17]

@Nielk

To boycott or not to boycott? This is our question.

I fluctuate between the two positions a lot .

My realistic side and my gut feelings tell me that we should boycott.

I've also been thinking of starting a movement with homemade banners on which we could write: "here lives a person affected by ME and I boycott the jaded P2P process because is not based on science" or something in this vein.

We can then put them in our front yards, by our windows and balconies. Wherever they'll be seen by other people, walking by or driving by.

What do you think? I think of it as a visual protest. How many of you have neighbors who are aware that we have ME? I bet not that many.

We need to build on the momentum and now is the tiME not to be shy, we've nothing to lose by speaking up. We've everything at stake and on the line by playing safe and docile.

People need to see us, but since we're made invisible by our disease, we need to come up with a visual and practical way to show them that we exist and we are tired of being pulled around.
We need to become visible.

 

[NK17]

I also wanted to quote Elizabeth Warren:
"If you don't have a seat at the table, you're probably on the menu."
It's clear to me that they're trying to put us on the menu again ...

 

[Kati]

@Nielk

To boycott or not to boycott? This is our question.

I fluctuate between the two positions a lot .

My realistic side and my gut feelings tell me that we should boycott.

I've also been thinking of starting a movement with homemade banners on which we could write: "here lives a person affected by ME and I boycott the jaded P2P process because is not based on science" or something in this vein.

We can then put them in our front yards, by our windows and balconies. Wherever they'll be seen by other people, walking by or driving by.

What do you think? I think of it as a visual protest. How many of you have neighbors who are aware that we have ME? I bet not that many.

We need to build on the momentum and now is the tiME not to be shy, we've nothing to lose by speaking up. We've everything at stake and on the line by playing safe and docile.

People need to see us, but since we're made invisible by our disease, we need to come up with a visual and practical way to show them that we exist and we are tired of being pulled around.
We need to become visible.

The general public has no idea what is P2P to start with. And most have no idea what ME is and how it differs from idiopathic fatigue. Most would be actually appalled that they are paying tax dollar to social security to support people like us. We do not have the sympathy of the public in my opinion. They don't know we exist.

The problem is at the societal level. It is nearing the perfect storm.

 

[Hate ME/CFS]

It will probably turn out to be, but we are not there yet.

Alex,
I'm not ready to give up yet.

 

[catly]

I just posted this on the other thread but I seriously believe what @Nielk and others say is true. If you read the first page of the draft report it says that "The final report (not draft) may be used, in whole or in part, as a basis for the development of clinical practice guidelines and other quality enhancement tools, or as a basis for reimbursement and coverage policies."

Having worked in healthcare and the insurance industry for 25 years, I can verify that the handwriting on the wall, HHS and the insurance industry is looking for a way to not pay for treaments, especially those "off label" for PWME. I mean, why do we need off label treatment of things like antivirals when a little CBT and exercise is all we need?

Also, NIH is under a lot of pressure and scrutiny right now, if you're following the 21st century cures iniative at all you will get a sense of what is going on--essentially they are getting called out on the fact that the US is rapidly losing ground as the leader on medical research developments to China and Europe. But NIH funding is NOT at all likely to increase, instead they are going to be forced to be more critcal in what they fund and to work more with pharma and biomedical industry and constoria. I'm sure they would love to reduce or not have to fund any MECFS research, let alone increase funding.

So bottom line, we are screwed! If ever there was a time to fight, it is now! Whether you do that by participating in the P2P process or by writing, emailing or tweeting your opposition and refusal to particpate. Do whatever you think is right or do both like I intend to.

P.S. I was thinking that perhaps those who attend the P2P workshop could possibly get T-shirts made that say #StopP2P4ME on one side, and on the other side say CBT/GET is Harmful 2 ME Pts. Just a thought. In case you can't get into the meeting with signs or banners.

 

[Ecoclimber]

The general public has no idea what is P2P to start with. And most have no idea what ME is and how it differs from idiopathic fatigue. Most would be actually appalled that they are paying tax dollar to social security to support people like us. We do not have the sympathy of the public in my opinion. They don't know we exist.

The problem is at the societal level. It is nearing the perfect storm.

Not many within the ME/CFS patient community knows about P2P...sigh.

 

[Gingergrrl]

I do not think that the P2P people are aware of the large pitfall of the PACE trial,
1) they don't know that the end measure value was change halfway into the study to include more patients as 'recovered'
2) they don't know that the PACE trial people refuse to release their raw data for the publis to scrutinize
3) they don't know about the covert conflicts of interest that surrounds the PACE trial
4) they are assuming that PACE included only patients with CFS however due to the broad and useless Oxford definition PACE included depressed patients and patients with idiopathic 'I've got 4 kids' patients.

We are once more getting screwed.

@Kati, I totally agree with you 100% but what I don't understand is that if we all know about this here on PR, why does the committee who is supposedly reviewing this research not know about it? They either are incompetent, or they are lazy and not actually reviewing anything. Either way it is bad!!!

Also, and I have not read the P2P info, but are they also looking at American studies or only the studies from the UK like the PACE trial? What I mean is, are they reviewing bio-medical info from researchers like Nancy Klimas (INIM) and Dr. Kogelnick (OMI), etc, or just the psychiatric based stuff from the UK?

 

[Dolphin]

Starting to make my way through it.

I'm dubious about their definition of the harms of diagnosis. This should really be compared to being in the same situation without any diagnosis - the latter causes more problems in my book e.g. I believe without a diagnosis, it's harder to get support from family/friends/employers/education authorities/disability payers/etc and it's more likely one will be seen as a psychiatric case (and indeed one might be more likely to become a psychiatric case without the support of others).

 

[WillowJ]

My sympathies to patients who will be affected by this review.

I'm pretty sure all the documents in all the countries, affect all of us. There's a domino effect.

Same language, though, probably has more effect. And certain nations probably have more influence in particular regions.

But overall, we're all in the same boat together. UK stuff is important, US stuff, Norwegian stuff, Canadian stuff, Belgian stuff, Japanese stuff, Australian stuff, etc.: all important to all of us.

 

[Dolphin]

I'm pretty sure all the documents in all the countries, affect all of us. There's a domino effect.

Same language, though, probably has more effect. And certain nations probably have more influence in particular regions.

But overall, we're all in the same boat together. UK stuff is important, US stuff, Norwegian stuff, Canadian stuff, Belgian stuff, Japanese stuff, Australian stuff, etc.: all important to all of us.

A related point is if the review makes some good points, they can be quoted in a variety of scenarios.

 

[Kati]

Starting to make my way through it.

I'm dubious about their definition of the harms of diagnosis. This should really be compared to being in the same situation without any diagnosis - the latter causes more problems in my book e.g. I believe without a diagnosis, it's harder to get support from family/friends/employers/education authorities/disability payers/etc and it's more likely one will be seen as a psychiatric case (and indeed one might be more likely to become a psychiatric case without the support of others).

The stigma that a ME diagnosis engenders in the medical world means that no medical specialty wants to touch us even with a stick. Compare this with HIV. All medical specialties are prepared to deal with an HIV/AIDs patient and how it is relevant to their field of practice.

 

[Seven7]

How do you fight a giant:

Is about perception, plp care not to look stupid. So you fight back with publicity of knowledge. Get the news about whatever transpired in the GWS which I am sure the same studies were cited. Then go to media and title "THE PERPETUAL ONE MILLION DOLLAR MISTAKE OF TAX PAYERS" and highlight what will it happen? will it be the same errors. Put it in spot light and educate, make segments on what is wrong with PACE and CBT and GED then send letters to Congregational leaders, call every single talk show.

They will think about the report when all eyes are watching, Is the only chance we will get.

 

[Gingergrrl]

I really feel that it would take someone at the level of a U.S. President or Oprah or a major world-wide celebrity to get ME/CFS for the general public to understand what it is and for any amount of funding to be devoted to research. Not that I wish it on anyone, but I feel that is what it will take.

 

[WillowJ]

@Kati, I totally agree with you 100% but what I don't understand is that if we all know about this here on PR, why does the committee who is supposedly reviewing this research not know about it? They either are incompetent, or they are lazy and not actually reviewing anything. Either way it is bad!!!

Also, and I have not read the P2P info, but are they also looking at American studies or only the studies from the UK like the PACE trial? What I mean is, are they reviewing bio-medical info from researchers like Nancy Klimas (INIM) and Dr. Kogelnick (OMI), etc, or just the psychiatric based stuff from the UK?

Pathways to Prevention deliberately selection people who had no prior involvement or knowledge of the topic at hand. They felt this was necessary to avoid bias.

As you know (but I will state for the record): Unfortunately, it probably introduces bias because people in general have an inaccurate idea of what ME and CFS are. The literature is enormously complicated due to various conflicting inclusion criteria, some of which are wildly inaccurate. It takes some time and patience to understand. Probably can't be done in a single time-deadlined project.

The search protocol did not specify biomedical research, but it did make a focused effort to include CBT/GET papers in particular. It does not include anything published prior to 1988, and there is no clear mechanism for including anything published after, I forget what date. Edit: I read tonight that they will re-search the literature before publishing the final report, and the final draft would include new publications that they deem to meet their criteria.

for a more thorough treatment of the topic, read occupycfs.com

 

[catly]

General techincial question looking for clarification, if anyone knows, is this draft AHRQ report the work of only AHRQ staff for review by the P2P panel or did the panel have input into the report?

 

[Esther12]

I searched the two documents for 'adaptive' to read what was said about PACE, and they really didn't go in to much detail.

They don't seem to have really engaged in much thought and analysis of the problems around CFS research, and have instead just regurgitated what's claimed in the published studies... which is what we expected, but it's still disappointing.

 

[WillowJ]

A related point is if the review makes some good points, they can be quoted in a variety of scenarios.

True. And they totally trash the Empirical approach, and mention possible harms of GET several times.

But they twist CBT into something useful as a treatment, when it should really take the same place as it does in any other disease: if wanted, offered as a coping tool.

It is not a "well, that's the best we have on offer, because we have many studies on it and not so many on other things, so we'll recommend it as a treatment."

 

[biophile]

We elected to include trials using any predefined case definition but recognize that some of the earlier criteria, in particular the Oxford (Sharpe, 1991) criteria, could include patients with 6 months of unexplained fatigue and no other features of ME/CFS. This has the potential of inappropriately including patients that would not otherwise be diagnosed with ME/CFS and may provide misleading results.

Adding a minor caveat isn't good enough if it is a fundamental problem which could undermine the entire review.

 

[medfeb]

True. And they totally trash the Empirical approach, and mention possible harms of GET several times."

WIllowJ
I was hoping to see a discrediting of the empirical definition when I read it but didn't see it. On the other hand, they included at least one empirical study that I know of. Could you point us to where the report trashes it so we can reference that?

Catly,

"General techincial question looking for clarification, if anyone knows, is this draft AHRQ report the work of only AHRQ staff for review by the P2P panel or did the panel have input into the report?"

If I understand correctly, the actual evidence report is created by a contracted evidence based practice center. I understand there is a separate technical panel that has some input to the search protocol but they did not produce the evidence report.

"If ever there was a time to fight, it is now! Whether you do that by participating in the P2P process or by writing, emailing or tweeting your opposition and refusal to particpate. Do whatever you think is right or do both like I intend to."

You are so right. This isn't an either/or decision. And I expect that for all of us a decision to submit comments is a decision to continue to oppose this report and the entire process.