Jen Brea: My ME is in remission

[Alvin]

i am a little skeptical by the fact that only 4 or 5 centers from around the world is aware of the problem and that in order to be diagnosed with CCI you need to see these specific doctors. It is a red flag to me.

Its not to me. In fact it may be normal.
The cutting edge of science is by a few who have discovered it or have decided to specifically pursue it.
I've had to go to some top world experts and have been offered opportunities by them to visit colleagues if i wanted to (lets just say going to Harvard for a consult being a Canadian citizen with no US health coverage was not in the cards and this was before being diagnosed with ME so it would have probably been an expensive waste).
Also some of those experts are total pricks who think they know everything even when they tell you your symptoms are impossible (wait that makes two doctors who told me that, i forgot this one)

 

[Alvin]

During this pre-surgical traction test, Jen felt healthy for the first time in years. With this traction test, the neurosurgeon temporarily lifts the skull off of the brainstem in a precise, x-ray-guided manner -- completely freeing the brainstem from mechanical compression. When the neurosurgeon let go, Jen felt sick with ME once again. This is one clear indication that Jen's problem was brainstem compression, as was mine.

Egads!
This means a non surgical method could help determine if a patient is likely to improve. It needs verification, replication, documentation and all that blah blah blah but this is a huge deal

 

[Jeff_w]

Not in my case. Going through surgery with ME is horrendous. I’ve had 4 of them.

Jen would concur. Six months prior to her fusion surgery, she underwent thyroid surgery, under anesthesia. She emerged from it much worse.

i am a little skeptical by the fact that only 4 or 5 centers from around the world is aware of the problem and that in order to be diagnosed with CCI you need to see these specific doctors.

You make a very reasonable point, but one could also argue this point regarding ME specialists. At one time (and perhaps even now), there was only a small handful of true ME specialists. The relative scarcity of specialists should not negate the validity of ME, nor should it reflect poorly on those ME specialists. In fact, they could rightly be considered pioneers, and the same could be said for CCI specialist neurosurgeons.

 

[Jeff_w]

Egads!
This means a non surgical method could help determine if a patient is likely to improve. It needs verification, replication, documentation and all that blah blah blah but this is a huge deal

Yes, this non-surgical method does exactly that.

 

[Hoopoe]

@Jeff_w how is traveling in a car when you have CCI?

 

[Milo]

I've had to go to some top world experts and have been offered opportunities by them to visit colleagues if i wanted to

I have been to the US for care, sound diagnosis, treatment and research, several times. I am not against that. From my point of view, we do need a systematic and science based approach into finding what’s wrong, what are the subsets, and what is the best treatments from us all. Just instinctively, a patient with severe gut issues will not be treated the same as someone who has epileptic episodes. We need to figure out what exactly is going on before rushing to deadly interventions.

And still, CCI would not explain why more women than men have ME, and why its onset happens either at adolescence or in the middle age years.

 

[Jeff_w]

@Jeff_w how is traveling in a car when you have CCI?

It was pretty horrendous. Dizziness, nausea, light and motion sensitivity, and a PEM crash afterwards.

 

[Alvin]

Yes, this non-surgical method does exactly that.

I don't like the x-ray component, i would prefer ultrasound or MRI or other imaging due to the radiation involved but you could get this turned into a clinical test for widespread use after adequate R&D

 

[Jeff_w]

And still, CCI would not explain why more women than men have ME

It actually could explain it, given that CCI occurs as a result of hypermobile ligaments of the craniocervical junction. Women are far more likely to have ligament laxity than men are. Furthermore, men generally have more muscle mass supporting their neck and head, thus mitigating against the impact of any ligament laxity and providing stabilization.

 

[Alvin]

I have been to the US for care, sound diagnosis, treatment and research, several times. I am not against that. From my point of view, we do need a systematic and science based approach into finding what’s wrong, what are the subsets, and what is the best treatments from us all. Just instinctively, a patient with severe gut issues will not be treated the same as someone who has epileptic episodes. We need to figure out what exactly is going on before rushing to deadly interventions.

And still, CCI would not explain why more women than men have ME, and why its onset happens either at adolescence or in the middle age years.

I wasn't saying i am against it either, my point is that in rare diseases or rare treatments there are probably often very few experts in the world. Even for mainstream diseases, i know more then one person who was used a new or experimental treatment despite the commonness and huge NIH research budgets for their conditions.
And this is a good thing even though its only from a few specialists in the world, it means research is continuing and hopefully leads to better treatment or a cure for all.

 

[arewenearlythereyet]

I am very sure they will exploit it. Thats why we need to be prepared.
As for being genius psychologists that they are not, they employ lies and easy answers. Exactly what politicians are doing today. Even the success rates are similar. Its a strategy of desperation and works until the tide turns.


The public does not respond well to nuance. They expect and respond to aphorisms and easy answers.

I’m afraid this is spot on. Unless very carefully handled the entire advocacy efforts using unrest will quite quickly unravel.

That’s what I meant on my earlier post about careful handling. I presume all the stakeholders that have supported and publicised Unrest over the last few years have been contacted ahead of this social media post. The MEA, all the politicians that attended the parliamentary debate, Carol monaghan, the key stakeholders at MEAction, people who have lobbied for years and years for the NICE guidelines to be reviewed.

I must say having read comments so far I’m surprised that it’s taken this course. I hope there will be more clarification to come. I especially hope that all will just talk about ‘remission’ rather than ‘recovery’ (a word that has been used to great effect in the media and PACE researchers to downplay the severity of the condition). Remission can be for years after all.

As a PWME I am really concerned that this could unravel and be turned on its head by the media. Hopefully we will see some sensible press statements from the stakeholders today and tomorrow that put this new development into context.

My own view is ..please just keep to facts...
ME is a fluctuating condition with periods of remission and relapse.
At the moment Jen is in remission and the reason for this is unknown.
We haven’t got enough understanding of ME to make clear hypotheses which is why we need more funding.

So no talk of pet theories at this stage ...just plain facts and a call for more research.

I hope that is what happens.

 

[Jonathan Edwards]

Hi Jeff,

I don't think the traction test tells us anything useful I am afraid.

I think both from scientific and personal points of view discussion of personal histories here is problematic. With respect, I would personally recommend posting nothing about personal histories until a publication is out. If this is real it justifies publication in something like New England Journal of Medicine, where peer review is still reasonably reliable. If there is reliable evidence here it would justify publication urgently - say within six weeks.

As Milo says, and as we all know, ME is an area where poor quality evidence has been the norm and has caused a lot of harm. The idea of this forum is to move beyond that.

 

[Sean]

Had general anesthetic twice, one for stomach biopsy, and another for septoplasty.

Didn't make any noticeable difference to my ME.

 

[JenB]

Thanks @JenB for coming here to read the comments. I very much hope that your recovery from all that surgery and your remission of your ME symptoms continues.

I have just read the e-mail that you have sent to those who have signed up to receive them. I hope you don't mind if I quote part of it:


So as I understand it, the sequence of events was:

- ME developed following a viral infection about 7? years ago, and became severe for some years.

- Thyroid tumor diagnosed a few years ago not requiring urgent treatment.

- Thyroid surgery carried out 1 year ago, at a time when ME symptoms were improving so well enough to undergo surgery.

-Completely new serious neurological symptoms including central apnoea and numbness in arms developed following thyroid surgery.

-These new neurological symptoms diagnosed as CCI/AAI.

- CCI/AAI surgery carried out.

- New tethered cord symptoms developed following CCI/AAI surgery.

- Gradual recovery from all 5 surgeries in the last few months.

- Remission from ME symptoms in the last few months.

I do understand the natural wish to form hypotheses to try to explain why ME symptoms have also improved significantly following the surgery, but as you have said yourself, Jen, your idea that your ME could have been caused by a milder CCI/AAI problem in existence before you had any of the neurological symptoms of CCI/AAI is just that - a hypothesis.

Reading the sequence events stripped of hypotheses, one could form all sorts of hypotheses about why someone going through that sequence of events might find their ME symptoms currently in remission. I am not going to speculate about an individual case. I don't think that is appropriate - I am not a doctor and quite rightly only have access to the bare bones of any individual's medical history.

The point I am making is that, as Jen herself has said, the idea that ME can be caused by CCI is at this stage simply a completely unproven hypothesis.

Crossposted with @Jonathan Edwards. I agree with everything he says. We need proper scientific research on this, and need to reserve judgement on cause and effect until that research has been done.

Hi Trish! There are a bunch of missing steps (I obviously didn't include everything in the email from #MEAction as that was not the intent). I'm going to write a post outlining the timeline of my illness and what I think is the most likely causal chain in my case. I think that will be more clear, accurate and useful. There is zero in doubt in my mind that the fusion surgery is responsible for the remission of my ME symptoms. I think when I share those details, the reasons why I think that will be clear. It will more likely be over several posts as this is all rather complicated and new (for me, for everyone).

You can't test hypotheses until you formulate them and most hypotheses come from empirical observation. We're in that latter stage, with more cases to come. I think that's very exciting. I am sure there will be a case series published and after that, perhaps a more systematic study. It will also be interesting to see if/how the VanElzakker and Younger brain imaging studies connect.

 

[cyclamen]

I have been to the US for care, sound diagnosis, treatment and research, several times. I am not against that. From my point of view, we do need a systematic and science based approach into finding what’s wrong, what are the subsets, and what is the best treatments from us all. Just instinctively, a patient with severe gut issues will not be treated the same as someone who has epileptic episodes. We need to figure out what exactly is going on before rushing to deadly interventions.

And still, CCI would not explain why more women than men have ME, and why its onset happens either at adolescence or in the middle age years.

Hi Milo
For example whiplash after accidents is more common in women compared to men. And it is known (only now?) that the female neck is less stable and less resistant to brute force - in addition until recently cars were crash testet only with a male dummy or a skaled down one.
The argument, more women than men are developing whiplash after accidents, has been used for a long time to make a point for whiplash is psychosomatic. Sounding familiar, eh?

 

[JenB]

And still, CCI would not explain why more women than men have ME, and why its onset happens either at adolescence or in the middle age years.

I'm pretty sure that at least most hEDS CCI patients are women. Also, most people with hEDS are women.

 

[JenB]

Hi Milo
For example whiplash after accidents is more common in women compared to men. And it is known (only now?) that the female neck is less stable and less resistant to brute force - in addition until recently cars were crash testet only with a male dummy or a scaled down one.
The argument, more women than men are developing whiplash after accidents, has been used for a long time to make a point for whiplash is psychosomatic. Sounding familiar, eh?

Per Fink still thinks this

 

[Milo]

I'm pretty sure that at least most hEDS CCI patients are women. Also, most people with hEDS are women.

Jen, we need to be careful here. hEDS does not equal ME. hEDS is a much contested diagnosis here, and it is important not to lump everything under one umbrella. It reminds me of Central Sensitization theory.

Moderator note: This post has been copied and some posts responding to it moved to create a new thread:
EDS, hypermobility, and the link, if any, to ME/CFS

 

[cyclamen]

Regarding age, Milo, you may be right. I know several people with POTS or ME with POTS, which had the onset after head/neck accidents, neck treatment, OP with awkward head positioning and this happened in all age groups.

 

[WillowJ]

New England Journal of Medicine,

Hopefully there's a better option?

The two problems with this are
1) the new editor (neither of the previous editors think he's doing a good job)
http://www.voicesinbioethics.net/vo...-in-bioethics-interview-with-dr-marcia-angell
https://www.cardiobrief.org/2011/09...blication-and-peer-review-of-aristotle-trial/

2) word on the grapevine is this journal has a policy of not publishing anything related to ME(/cfs).

Or maybe just put it somewhere there would be robust post-publication review. As pre-publication review doesn't seem reliable or meaningful.