Jen Brea: My ME is in remission

I'm mostly absent from the forum now but just swinging by to congratulate you @JenB! This is fantastic news. I'm so happy for you.

I had a long remission myself many years ago and was surprised that I felt quite down emotionally - because it's only when the shit is over that you know exactly how much you've lost and can properly grieve for it. YMMV (and I hope it does) but I think it's worth knowing that this can happen and being prepared for a period of adjustment.

I think you've done 100% the right thing in sharing that you're in remission. I'm confused about exactly why it might not be a good idea to share your history in terms of that possibly affecting publication of research.

Can you explain a bit more, please, @Jonathan Edwards? If I'd gone into a remission I'd be posting the details because there might be a subset of PWME who could make the same journey. So I think it's natural for Jen to want to do this but is there a point at which that might be considered pre-publication of material that might go into a later paper? Where is the safe boundary? Or isn't there one?

I appreciate everyone here focusing both on congratulating Jen and on trying to get research moving that might benefit a subset of PWME. I don't think I'm in this particular subset but perhaps solving ME is going to be a question of knocking off one subset after another.

 

That is how we should proceed. It seems likely that subsets exist. With every subset identified, figuring out the remaining ones gets easier.

 

The thing is if there is subsets they are likely different diseases but have to be named and disease mechanism elucidated

 

No there is no problem in terms of affecting research publication.

In the absence of an underlying problem such as Chiari Malformation, rheumatoid arthritis or myeloma, my understanding is that clinically relevant CCI is extremely rare. I would guess not more than one person in ten thousand. And the presentation (in the absence of Chiari) would not be expected to resemble symptoms of ME.

In this context, before doing any surgery I think it is essential to confirm or otherwise the suggestion that PWME, beyond perhaps one or two chance isolated individuals, have significant CCI. I appreciate that Jen feels she wants to share her news but she is in a high profile position in ME advocacy and there really are serious downsides to making this public. Nothing to do with publication but to do with potential harms others may bring upon themselves.

A member of staff in our department at UCL had a congenital spinal problem, perhaps Chiari, and was operated on. The member of staff was a lot worse after surgery and never returned to her job. When I last saw her she was using a wheelchair, having previously been able to manage a busy clinic on her feet. A number of patients in my care deteriorated with surgery.

I find it very hard to know what to make of all this, but what I do know is that it makes no sense to me. If we have published imaging data then things might become clear.

 

Thanks for explaining - I'd misunderstood your concern.

That sounds like a way forward.

 

Thanks for the good wishes @Alvin. Your description of feeling like being on a rollercoaster or affected by centrifugal force was just how I felt. I had to be completely flat for 2 weeks.
I plan to test out whether I still have it with a shorter distance by car ( maybe 100 miles) but I need it to be a journey with no important events after it so that I can lie flat if need be. All my family live 100, 200 miles or across the Atlantic so it’s very restrictive on family life.

 

This post related to the New England Journal of Medicine.

Having received summaries for many years, plus some related journal articles, I would agree that there is almost never anything on ME/CFS. I have always been puzzled by this.

 

I suspect that that is because nothing of sufficient significance has been submitted. NEJM aims to take about the top 0.1% of all clinical research papers. I was lucky enough to publish in it once. I cannot think of a paper on ME that would have qualified for NEJM.

 

we dont have anything else really. just personal stories.

imo its important to evaluate and think about implications of such experiences.
perhaps even in particular, if things dont make straight sense to one.
or dont seem plausible.

if such threads are an issue, then they could be marked in the title with "ANECDOTAL" or "CONTROVERSAL" or something like that.

whatever the purpose of this forum is, ppl shouldnt be expelled for sharing their controversial stories.
they will share elsewhere anyway.

since here are possibly more ppl with a very indepth background on diseases and mecfs, it seems a particularly good place to present such super-healing controversial stories. jmho.

perhaps better find a clear tag for such threads and a "warning popup" before reading (if technically possible) or similar... ?

 

The finding could also mean that there is a sub-set of people with ME who have specific symptoms which others do not have (eg worsening of symptoms when turning head) who have CCI. Based on what I’ve read, both before and since Jen’s surgery, I will not be seeking testing for CCI at this time because I do not have the symptoms which led Jeff and others to seek testing. I presume that the 24 in question did.

Thanks for your post, Hutan. I agree 100%

@JenB I really don’t want to appear overly critical or ungrateful. I am delighted for you that your ME has gone into remission and I am indebted to you for all the work you’ve done to help people with ME, but the more I have read and the more I have thought about this, the more I feel it would be wise to proceed with extreme caution.

As @Trish, @Jonathan Edwards, @Hutan and others have said, there are some very real and serious risks. I am intrigued by your account and very keen for scientists to understand exactly what has happened and how your experience may or may not be relevant to other people with ME, but I hope you will agree that it is paramount that your account is treated with the same degree of skepticism as it would be if your ME had gone into remission following any other type of unproven treatment. As well as the risks to individual patients of seeking such treatments, we must also be aware of the disastrous effect it would have on advocacy if the most high profile ME patient in the world was seen to have been promoting untested hypotheses which turned out to be wrong – particularly if it resulted in patients seeking inappropriate treatments which resulted in harm.

I don’t mean to be critical of your decision to write about your experience – I think that was both right and necessary given your high profile, and I don’t underestimate how difficult it must have been. But I think you need to be exceedingly careful when speculating about the science or giving anything that might be interpreted as medical advice based on your experience.

 

yes, robert... thanks for the input...

imo, its not the problem, that these ppl share their story, but that other ppl here dont ask questions.

e.g. all those pages and nobody answered the meds-questions. nobody here bothered to ask them (again).

if such threads in a "s4me" forum only can come up with exchanging niceties, best wishes and asking for medical papers which cant exist, then perhaps its best to not allow such threads.

if those presenting their stories would answer everything (as good as they can/know) and ppl would indeed ask "real" questions, then it could be an interesting and important thing. imo.

 

I must say Jonathan raises some good points.. Over the years we have had so many anecdotal recoveries, and while I don't doubt most of the recoveries in itself (including Jen and Jeff), we cannot know without research what actually caused them.

Already I am seeing on FB-groups ME-patients convinced they have CCI, and certainly a decent percentage of those will pay out of pocket for screening and potentially surgery. This seems very premature, and reminds me of how myself and hundreds of others went to try rituximab privately. At that point there was actually a positive phase 2 to back those decisions, and still most of us ended up with zero response. Phase 3 showed that ME-patients also can get strong placebo effects.

Now, being no expert on CCI, I assume that if u get diagnosed with it u have it? So my question is, if u do get diagnosed there's no risk that u get an operation for something u might not have? At the very least I hope that chance is low, considering a failed operation can further ruin ur life (I dont know the actual risk for this mind u)

 

I am so happy for @JenB and @Jeff_w . It must be a marvellous feeling, yet difficult to reconcile emotionally. I hope that your remissions continue.

ME to me seems to be a common end state; given the variety of triggers, and gradual onset, there will be subsets, or indeed it may in future be found to be separate conditions.

It is very much a what works for some will not work for others - and that may relate to the interactions between genes and environment which may modulate how a set of circumstances over time affect an individual.
My daughter's trigger was glandular fever; but she had allergies from an early age, especially after chickenpox, and had anxiety which may be relative to genetic switches re B vits and also issues at school . Immune system seemed a bit low, growth spurts were problematic. There was therefore a lot in the background. Her body was already struggling to cope with things.

My analogy for ME is a structure when hit by a storm- if all the fixings are joined together per the original spec there should be little damage - if some of the connections are loose/ missing/wrong, then the degree of damage reflects the condition of the overall system - there may be some workarounds but it will not be, nor function as before. Thinking needs to be systems based, not individual insults.

EBV I remember reading can affect collagen/connective tissue ( this is from memory so feel free to correct me), and perhaps other viral infections may do the same too - so it may be that EBV could accentuate issues that may go under the radar otherwise and cause just enoough of a change to make manifest other issues.

The most annoying thing however is that, historically, not many have bothered to look/ consider a wider picture ( or even a teeny one)

 

Not if the subsets are so very so tiny that it leaves a majority who may have one thing, for ever waiting for their turn.

 

I think that oversimplifies things.
If you are diagnosed with being tall, are you tall? Depends doesn't it?
The diagnosis of CCI will depend on an arbitrary cut off considered normal. The question is whether the cut off has been put in the right place and whether the imaging reliably reflects the anatomy. Maybe it does, I am not an expert.

Hypermobility is diagnosed by an arbitrary cut off on a score such as Beighton. Why the cut off is where it is nobody knows. Moreover, whether you score for a joint can be very subjective.

Is a man anaemic if his haemoglobin is 13.5 (lower limit of 'normal' for men 13.8)? For a woman 13.5 is bang in the middle of 'normal'.

 

yes. do you want to forbid it to them ? or keep info secret ?
if you see yourself sinking, you are naturally desperate.
it cant be avoided, as long as ppl dont have any other hope or help.
dont blame the (false) messengers. to blame is the medical profession.
they are creating it all - the desperates and the messengers.

no, i thought of the questions in this thread asked previously, regarding medications, and if they could have a decisive role in the "improvements".
nobody here asked them again.

but - jen and jeff are not answering them anyway.
they are strangely selective with their answers.

pretty much the same as in their other thread here on the same thing, where both of them replied, think it was in the last year.
lots of pages, with no substantial answers or information given.

i may be wrong...
but the only measurable thing i saw was that step counter from jen ?

 

Well I guess someone had to step up for the free Likes

 

It cost me 0€.
The surgery itself - that is expensive.

 

I find speculative hypotheses very useful and thought provoking. If there are those who do not like speculative hypotheses, I suggest that's just personal taste.

Some scientists are experimentalists, and like to deal with observation and empirical fact only. Others are theoreticians, and like to deal with theories, models and hypotheses. In physics, it is said that experimentalists and theoreticians never mix, as they are different breeds.

Personally I like theories and hypotheses, and would encourage any thoughtful and scientifically-minded ME/CFS patient to post their speculative hypotheses.

Do you have evidence to indicate that such stories work against advocacy efforts? On the one hand you are asking for proper evidence regarding ME/CFS treatments, and asking people not to make unproven speculative hypotheses. But then you put forward an unproven hypothesis of your own! Can't have it both ways!