Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

Yes that was it. Looking at it again, it has no new data either, but at least it makes a critical appraisal of what is out there.

 

I'd argue that they are well respected CFS experts, Simon does not think ME exists. And White has actually highlighted the differences between what Ramsay called ME and what they (White & co) were calling CFS. Sharpe, of course, another 'expert', is confused and claims they are different conditions but then conflates them anyway. But you are correct, this little club of doctors are harmfully seen as ME experts, when they are nothing of the sort, they are psychiatrists who smoothly abseiled their their way into ME arena, late 1980s, and the medical/political establishment did nothing to stop them, in fact made it all too easy. And this is why we are where we are now.

 

Thanks for the link @Michiel Tack. I havent had a chance to read it yet but will.

 

Given this choice of title, I think the question moves the discussion to a political perspective. In theory it should be informed by clinical insights but we dont have many so its hard to be confident of what should or should not be included in ME advocacy at this time.

If ME advocacy considers all the conditions currently associated with ME then its becoming CFS advocacy and some understandably argue for this because attitudes in medical services and insurance should be revised because of the recurring patterns of ignorance. You cannot argue against that because it is true. One aspect of this is the gender bias which was the main point of Unrest. That is a bigger issue than simply ME and has been seen before in relation to other misunderstood conditions. It is an issue which has political momentum at this time because of the Me Too movement.

The other side of the coin is that ME advocacy has a name specific to a particular condition. The problem with that is we dont know what ME is yet and we dont know which conditions are comorbid and which are likewise poorly understood and mysterious and concidentally occurring in the same situational context of medical ignorance and reluctant medical insurers.

It strikes me there are two dynamics here which both need to progress, its not an either or situation, they both need to happen.

There needs to be a large scale advocacy movement which collects patients with conditions of all kinds and focusses their cooperative ambitions to improve medical attitudes and call attention to areas of medical ignorance where research is needed. This needs to exist but should not be limited to or named in relation to ME.

At the same time for ME advocacy in particular, for the sake of clinical progress, there needs to be a drive towards discovering and defining the nature of the condition we think we perceive and know as ME, subtyping and sorting out what is comorbidity and what are distinct conditions. In that way ME research can progress but any discoveries or insights which cause a division in patient lobby groups do not exclude a patient group from the table of the bigger advocacy movement.

 

I think this post here provides one unfortunate answer to the question posed as the topic of this thread. However, it's just one post in one of many threads Jen Brea has started with the purpose of asking questions about CCI and the surgery that she claims has led her to remission. I don't know that many people have seen it or that anyone's come away agreeing or that it's helped form opinions. I do find it rather disturbing nonetheless; plus it's in a subthread where a patient who says she is severe and has questioned Jen's narrative took a few potshots--fairly mild, but still--for asking questions. Also, given Jen's popularity, it's not a reach to suggest quite a few people have seen it.

 

Ivan Watson (the first commenter in that screenshot) has been sharing his personal theories about ME in ME facebook groups since well before this CCI thing came out. Before that, he was telling everyone that ME is caused by candida. And various other things.

Jen has always been very clear that she is only talking about a potential* subset of PWME. It's not her fault if people who haven't done their research properly then start saying "all ME is caused by neck problems". There will *always* be people who don't read what you're saying properly and go around sharing an oversimplistic conclusion from it.

*edited to correct what I originally said

 

(I'm not supposed to be posting) but shouldn't that be "a potential subset of PWME"?

It's not a given; we don't yet have the evidence that this is a subset of PWME.

Jen has both a personal responsibility and a duty of care as co-founder of MEaction. I cannot buy into "It's not her fault if people who haven't done their research properly then start saying..."

 

https://twitter.com/user/status/1158119592671117312



https://twitter.com/user/status/1158148850709745664

 

Agree, Suzy. Of course it should be a *potential* subset, there is no evidence, only anecdote. Although, I - like others - think CCI may also now be a candidate for a differential diagnosis of ME.

 

Yes

 

However carefully you report something, there will always be people who misrepresent what you have said.
My point is that Jen isn't to blame for what Ivan Watson wrote about CCI, because that was Ivan's opinion and actually not consistent with what she has been saying anyway.

 

Yeah, but I didn't 'blame' her for it, I was just pointing out that the sort of post I had a feeling I'd see eventually, ended up popping up. Now, I don't think it matters how many bandwagons this guy jumped on. I'm not familiar with him. There have to be others who aren't, either. So think for a second about someone who's new to all this. Newbies fall down our rabbit hole all the time--a few years ago this obvious fact was hammered home when I saw a thread on Reddit with people asking who Vanessa Li was, a year or so after she died. It reminded me of being frustrated knowing that the first thing a lot of people see when they first start digging into the community is (was) the CFIDS Association, or these days maybe Health Rising which posts a bunch of stuff I invariably find annoying.

Someone who's new to all this sees Jen focusing on CCI--constantly. Yes, with disclaimers, obviously. But not long after she announced her remission people were already talking about research funding going towards this new shiny object (which wasn't even new). Someone new to all this probably figures "Ivan" knows more about what's going on than they do. Of course, it's up to them to do their own research, and come to their own conclusions...but any way you slice it, this 'Nightingales' thing has led to people discussing ME when it appears they're talking about CFS, and don't know there's a difference; talking about PEM in a way that suggests they don't experience what those of us with Ramsay ME do; and thread after thread of EDS, MCAS, etc. You might say there's nothing wrong with any of these individually. Fine. But collectively it's creating a community of people who think they're talking about ME when it's difficult to consider that's what's actually being discussed. And the result is that, yet again, Ramsay ME disappears under a heavy blanketing of co-morbidities, other illnesses with some overlap...into the 'wastebasket' that CFS became. I don't see this as a positive development, sorry.