Why MEpedia is flawed and potentially harmful to advocacy

[Comet]

What bothers me most about this whole thread, which, frankly, mirrors much of what I have seen watching advocates in this community over the last six years, starting with Marley and Pandora, is the defensiveness, the lack of understanding about the importance of strategy and planning, the inability or unwillingness to understand and engage with substantive criticism, and the lack of awareness that success is contingent on attracting the right talent, that how you engage sends messages that attract or deter. We need a professionalization of advocacy and I struggle to see how that will develop given these conditions. It's all very depressing.

I've often wondered how we could hire a PR (Public Relations) firm. It's so difficult for so many of us to advocate for ourselves.

 

[mfairma]

We need good leadership and we need an advocacy organization that can think and act strategically, that understands where we are, as a disease and as a community, and where we need to be and can develop and implement a plan to get us there. What is frustrating to me is that there are so many different spaces that we don't touch or consider, as a community, because we think too linearly about how to engage and so many areas in which we engage without realistic possibility of success or sufficient understanding of the factors needed to succeed. I think the community has gotten better in recent years about thinking through alternative forms of engagement, such as the shoe protest or even, in some ways, MEPedia, but we still lack the sort of systematic, rigorous approach needed to get us where we want to be and, in my view, most of the people driving advocacy today do not have the ability to put in place the framework needed to get us there.

We need a real organization that can move us forward and the reality is that (1) we are too sick for that organization to be patient run, as Comet pointed out; (2) we, as patients, may not have the relevant skill sets in management, communication, politics, science, etc. to really be effective; and (3) non-hierarchical organizations built along the Act Up model, such as ME Action, will struggle to reach consensus, to work cohesively, and to cultivate the quality of leadership needed to be effective. We don't need to reinvent the wheel for this disease. We just need a normal advocacy organization, but with the right people, and to bring it back to the issue of the thread, if we're driving those people away by how we collectively think and engage, then that's bad.

 

[Comet]

I've often wondered how we could hire a PR (Public Relations) firm. It's so difficult for so many of us to advocate for ourselves.

I hope this didn't come across the wrong way. I wasn't trying to put down anyone.

 

[mfairma]

I don't say that as in we have nothing to contribute, but in the sense that maybe this is a house we can't build ourselves.

 

[alex3619]

I was arguing these same points about what advocacy needs as long as 7 years ago. The same issues keep arising.

 

[Groggy Doggy]

Sometimes I feel like Bono. The only organizational body (I know of) that has the power to squash PACE, influence Medical Schools (textbooks,etc), change the attitudes of physicians, get the web pages changed on the CDC site. WikiPedia, etc. is....Big Pharm. Am I the only person that sees this?

The sooner we get repurposed medicines into Phase II doubled blinded trials, Big Pharm can start calculating how much money they will make (a lot), and the biology will be proved. Yes, we have different subtypes so I would expect that many drugs will need to be trialed. My doctor, Dr Robert S Fredericks, has 40 years of experience and has been working on ME/CFS for over 20 years. He can produce his research (from his own patients) that is needed to support the trial of 2 repurposed drugs. He has a small office with one nurse. His office does not have the capacity to run a Phase II drug trial. He also sees promise in a 3rd repurposed medication, that works with leptin.

I can only speak to the one repurposed Rx I take, Forteo, which costs about $2500 per month. I can not afford to take it continually and have to ride the ups (when I am taking it) and the downs (when I don't take it). Forteo has been around a long time (R&D already paid) and there is only the manufacturing cost involved. You have to take it each month to gain the full benefit (daily pen injections). Can you see the potential profit gain, I sure do.

Forteo, is made a large drug company, Eli Lilly, and it's a synthetic Parathyroid Hormone. Eli Lilly owns the patent.
https://en.wikipedia.org/wiki/Eli_Lilly_and_Company

Here is the newest research to back up PTH:
Inhibition of salt inducible kinase (SIK)

http://press.endocrine.org/doi/abs/10.1210/endo-meetings.2016.BCHVD.12.OR35-1
https://www.sciencedaily.com/releases/2016/04/160429105531.htm​

If anyone is interested, I will start a new thread on this topic.

GD

 

[Skippa]

@Groggy Doggy yes I too am amazed that big pharma haven't jumped on this disease without treatment and milked it like the cash cow it is.

 

[barbc56]

I may be wrong but it could have to do with the fact that there are no biomarkers, knowledge of me/cfs is elusive, so research is scant and it goes on and on.

It's an uphill battle to say the least.

There are prescription drugs to treat symptoms but for me, I can't take them. I wonder how many others can't.

It's so frustrating, Sometimes I feel like crawling in bed and pulling the covers over my head. Oh wait, right now I'm already in bed so I guess that's one less step.

 

[Valentijn]

I think people get a distorted idea of just how much influence PACE has in the UK.

A neurologist in the Netherlands printed it out and handed it to me in his office when I challenged his claim that exercise is the only thing that can help ME patients. This was after I had told him that an NRI was helping my OI symptoms, and handed him two sets of blood results from a year or so apart showing I had low levels of norepinehprine.

Admittedly, this "doctor" (fired soon after for other inappropriate statements to the media) was especially enamored of psychosomatic explanations and lying to patients to make them believe they had been cured. He was disgusting enough that even students attending his lectures were recording their challenges of his statements while in class, and publicly mocking him online

I could be way off base here but I thought that PACE was part of the rational for the NICE guidelines for ME.

The current NICE guidelines pre-date PACE by several years. But when asked to review the NICE guidelines for ME/CFS, PACE has been used as an excuse not to. At the time, it had been uncritically accepted that PACE was a robust study, and that it supported the other (inappropriately over-rated) research used to create the NICE guidelines.

But this is rather circular reasoning, when PACE itself is not being examined, and contradictory evidence (such as the Wijborg trials in the Netherlands showing no improvement via actometer after CBT/GET) is also not being considered. Apparently the research will not be examined unless there is a review of NICE, but there will not be a review of NICE until an examination of the literature shows there should be one.

But this unwillingness to review controversial trials may have changed with a lot of high-profile criticism of PACE from various respectable academics around the world.

We need a real organization that can move us forward and the reality is that (1) we are too sick for that organization to be patient run ....

This is a problem, but often solved by having multiple patients who can fulfill each roll. Then if one (or several, or many) people are too crashed to do their usual thing, other people fill in. Alternatively, we can just shrug and accept that there will be times when everything grinds to a halt, and not get upset about that.

 

[Valentijn]

Hi everyone – I personally have no plans to use MEpedia "heavily" (or at all) in #MillionsMissing. Nor have any organizers I am aware of expressed that intention or even discussed this.

The clarification is very much appreciated. It's been pretty confusing to try to figure who's "running" ME-pedia, as much as anyone can be said to be running a wiki.

There is no link between #MillionsMissing and MEpedia. Never was.

That's quite reassuring. It'd still be nice to have ME-pedia as a very reputable/professional resource some time, but it's less urgent if it's not being heavily promoted as such already.

It has been repeated numerous times that we promote dubious treatments (not true – most of the pages in question or either blank or cite published research).

I think the problem is not with actual promotion in the content of the treatment pages, but with the appearance of all treatments being given an equal weight, such as by all appearing together on an unsorted list.

This list of principles: http://me-pedia.org/wiki/MEpedia:About
This list of editorial guidelines: http://me-pedia.org/wiki/Editorial_Guidelines
This list of scientific guidelines (still to be written): http://me-pedia.org/wiki/Science_Guidelines

Thanks for posting the links. The Editorial Guidelines already help a lot, and the Science Guidelines should be capable of nailing down the specifics. My one problem is that these are listed on a very long front page with a lot of text. It makes it hard to spot them, or to know what to read.

If someone from within the project proposed that we keep all of these pages but only highlight on the front page those interventions that have the best evidence base or are the most important to patients, I personally would support that.

That's excellent news. I agree that pages (with an honest review of the evidence) are necessary even for the more ridiculous treatments, but just want to see the more robust treatments getting much more prominence, with the other stuff tucked away in a quiet corner. My earlier concern was that such a division seemed to be getting a lot of opposition, but I would happy to participate in coming up with a solution and implementing it, if it's got a fair shot at being accepted.

If we used evidence as the standard, since we've had very, very few clinical trials on any interventions on ME patients, we'd probably need to remove nearly all of the drugs, herbs, etc. from the front page except for Rituximab and *maybe* Valganciclovir but the Valcyte studies aren't great either.

"Evidence" doesn't just mean "evidence in ME patients." Even where there is a lack of evidence for use of a supplement or drug in ME patients, there is relevant research in other populations for that supplement or drug in treating a symptom which ME patients also have. A couple examples are fish oil, which research has been shown to be anti-inflammatory, or magnesium being a treatment for fasiculations.

Anyhow, thank you for the very thoughtful and detailed reply. I think enough of my concerns have been addressed that I'm willing to dive in to ME-pedia as my health and time allow

 

[barbc56]

I think we are so focused on PACE and for good reason. However CBC/GET have been recommended for years so maybe the doctors are talking about the general idea of these treatments vs. the PACE trial specifically. But you end up with the same mindset and impact either way. This is speculation on my part so I may be completely off base.

This is a problem, but often solved by having multiple patients who can fulfill each roll. Then if one (or several, or many) people are too crashed to do their usual thing, other people fill in. Alternatively, we can just shrug and accept that there will be times when everything grinds to a halt, and not get upset about that.

Yes, it goes with the territory that there will be times no one is available even with the safety net of several people workingon a profect. By not worrying about this, which is much easier said than done, you can use that energy to rest and feel better, hopefully sooner.

Sometimes these things are just beyond our control and it's counterproductive to waste energy on worrying about it.

But we are only human. At leat last time I looked.

 

[Groggy Doggy]

@Groggy Doggy yes I too am amazed that big pharma haven't jumped on this disease without treatment and milked it like the cash cow it is.

Dr Fredericks would like the support of Ron Davis, because Ron can use his expertise to help prove the hypothesis. It will take someone prestigious like Ron to convince a pharmaceutical
company to take the risk of investing a large amount of money for a Phase II trial. After the issues with Ampligen, I think its going to be a hard sell to find a pharmaceutical to trial an ME drug.

Dr Fredericks wants to help us; he wants nothing in return. Dr Fredericks would like to help Whitney too.

 

[Groggy Doggy]

I may be wrong but it could have to do with the fact that there are no biomarkers, knowledge of me/cfs is elusive, so research is scant and it goes on and on.

There are volumes of research on ME. It is a highly complex disease. If 2 subtypes can be helped, then I think we need to push to get these trialed.
We have the 2 day CPET. That's the best biomarker we have today.
NIH will publish their report in about 3 years? Do we really want to wait that long?

And Dr Fredericks research can identify two distinct subtypes.

ME has been around for over 70 years. Is it that hard for us to accept that what we have been protesting about is already here?

 

[barbc56]

@JenB

I echo @Valentijn. Think you for the clarification.

The one thing I would dispute is fish oil which is not proven to be

For some reason the site will not let me copy and paste. So I will summarize one part, people can read the article and come to theit own conclusion .

Between 2012 and 2012 there have been at least two dozen rigorious studies in prestigious journals that show fish oil is not beneficial. One reason is that the original studies were done at a time when medical research was based on the knowledge base known at the time which has advanced.



http://well.blogs.nytimes.com/2015/03/30/fish-oil-claims-not-supported-by-research/?_r=0

 

[barbc56]

We have the 2 day CPET

I thought there are problems with using CPET at least as a biomarker.. Do you have citations? I will also look.

NIH will publish their report in about 3 years? Do we really want to wait that long?

I don't think we really have a choice and if we jump in this may hinder the process of finding what really is going on? But yeah, it's hard to wait.

 

[Groggy Doggy]

I thought there are problems with using CPET. Do you have citations? I will also look.

I don't think we really have a choice and if we jump in this may hinder the process of finding what really is going on? But yeah, it's hard to wait.

Dr Fredericks research tells us what IS really going on a metabolic level. He has done the work. Now he needs to hand it off to Ron, so Ron can use it.

He has been working on this for 20 years. He is a brilliant researcher.

 

[barbc56]

Anyhow, thank you for the very thoughtful and detailed reply. I think enough of my concerns have been addressed that I'm willing to dive in to ME-pedia as my health and time allow

Unfortunately after reading the first edit about mitochondrial function, I no longer feel comfortable participating in this. Maybe a less contentious subject would have been better for a first edit?

The general thread.
http://forums.phoenixrising.me/index.php?threads/can-you-help-working-on-mitochondria-page.45729/

My response which a lot here will probably disagree with. I simply do not have the energy to participate when IMHO, it will only end up with unproductive Wiki wars. I'll advocate in another way if I can.

http://forums.phoenixrising.me/inde...on-mitochondria-page.45729/page-2#post-744069

 

[msf]

I base the comment on conversations with consultant physician colleagues who work at places like UCH, Great Ormond Street Hospital and other London teaching hospitals. They had never heard of a PACE trial. I think people get a distorted idea of just how much influence PACE has in the UK. Wider patterns of clinical practice may well be a problem but I am not sure that clinicians base that on PACE. If anything PACE seems to have had more influence elsewhere as far as I can see. I am happy to contribute to the effort to make the poor quality of the PACE trial better known but I don't think it is the reason why physicians in the UK use CBT - at least not in London teaching hospitals.

So why do they use CBT?

 

[msf]

@JenB

I echo @Valentijn. Think you for the clarification.

The one thing I would dispute is fish oil which is not proven to be

For some reason the site will not let me copy and paste. So I will summarize one part, people can read the article and come to theit own conclusion .

Between 2012 and 2012 there have been at least two dozen rigorious studies in prestigious journals that show fish oil is not beneficial. One reason is that the original studies were done at a time when medical research was based on the knowledge base known at the time which has advanced.


http://well.blogs.nytimes.com/2015/03/30/fish-oil-claims-not-supported-by-research/?_r=0

Beneficial for what though?

The article you quoted said most of the studies (published between 2005 and 2012 actually) were done on its effects on heart disease. This does not mean that it has no effect at all on the body. I don´t think most people with ME are using it just to ward off heart disease.

 

[mfairma]

I was arguing these same points about what advocacy needs as long as 7 years ago. The same issues keep arising.

Yes, it's frustrating. I think there are plenty of places patients can help make the difference, but smart advocacy to me means finding leaders who can put in place the conditions for future success and help the community understand what better advocacy means and how they can play the best role in that advocacy.