Jen Brea: My ME is in remission

[DokaGirl]

Would getting the NIH study to check for CCI also help? They would have a more neutral perspective and a healthy cohort. Because I’m not sure how a single case report would add a lot of clarity. I trust the details and veracity @JenB has given[/QUOT


Exactly @dreampop! I
hope the NIH will do imaging for this. I understand these researchers have
done some brain imaging. However, I note that CCI testing needs to be done while standing.

Other thoughts on this are: how would I ever get tested let alone have surgery if I needed it - costs and medical skepticism would be pretty much impossible.

I wonder about neck injuries such as whiplash, and three people I know who had multiple whiplash injuries. They all have Fibromyalgia. I also wonder how the Dysautonomia community will react. And finally, I will go back and look at the CCI symptom checklist. I think I have a number of the symptoms. However, I learned long ago that the body can only react in so many ways. This tripped me up many times, as my symptoms would match disease or condition A, and I would pursue that - when nothing improved, my search resumed with B, C, D etc., etc.

 

[wastwater]

I have heard of chiari malformation from my rare gene group,but never paid much attention the person said sometimes people are misdiagnosed as having fibromyalgia

DMP022 Narrow spinal canal as an unknown characteristic in Axenfeld-Rieger syndrome
https://www.spine-health.com/video/cervical-spinal-stenosis-video

Mostly I don’t have those symptoms

 

[Alvin]

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.

I assume its going to come and go for me and this is just a symptom of increasing ME severity
That said if i figure out exactly what caused it i'll post it

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'm very different i will seek testing if i can reasonably manage it. One of my greatest fears is that a treatment for ME will be found and it won't work on me and i had something else all along and if it was something that could have treated years earlier those are years i can never get back.
That said i most certainly would not undergo risky surgery on a whim or on flimsy evidence, but that traction test mentioned is a very good test that seems non invasive and rather conclusive. Of course i would suggest dotting i and crossing ts before subscribing to easy answers.
That said i doubt i have CCI but i can only prove that with a proper test

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

I can imagine

I'm sure they will, but their own ideological model would have guaranteed Jen would never have gotten this surgery.

Very true. In the end we need a culture change, we need to say psychosomatic has to be proven and not default and we need to make sure fraud is weeded out, PACE was doctored to give the results they wanted, even when their own stacked deck during the trial before the doctoring turned on them they would not accept reality.

Wouldn't be a smart move. Pretty sure they'll make it, but it's a dumb argument that actually demonstrates how incompetent and indifferent to our well-being they are.

Public sentiment is not about reality, its about chosen position. Hence doublethink, alternative facts, lies, scapegoats and so on are employed, to pretend reality is what they want it to be.

Jen is the highest profile ME patient in the world. Or was, maybe. And she is making a miraculous recovery. As has Jeff and others. The psychosocial ideologues claim to not be interested about cause and etiology because they're all about rehabilitation. And here are stories of misdiagnosed (or distinct subset) patients who have made a significant recovery and... zero interest. None.

If you mean by the PACErs then of course not, they are only interested in the psychosomatic religion they have created. If you speak of public sentiment we are just not a big kettle of fish in public consciousness. If you speak of the media they have problems of their own from sucking up to bullies to hubris in believing they know right from wrong and are not subject to human foibles.

If we take their claims of wanting to help us at face value, these are people who have dedicated their career to "rehabilitating" severely ill people and they show no interest whatsoever in a possible case of significant recovery by the highest profile patient in their field of expertise. Whether it's a subset or a misdiagnosis is irrelevant, by the MUS model of ME, these cases were "textbook" cases of CFS, thanks to the extremely vague and muddied definition they unleashed onto the world.

Which frankly yet again shows they are full of shit but it's way too on the nose, they can't even bother faking interest in possible significant breakthroughs about a disease they "own" by way of being the creators of the current dominant paradigm. The same with a potential diagnostic test by the nanoneedle, absurdly claiming that a diagnostic test isn't particularly needed despite diagnosis being THE most significant obstacle to progress. That's shocking incompetence.

They are selling a religion of lies. Religion is based on faith not science. They can't acknowledge reality because it would shatter their faith. They demonstrate repeatedly that they would rather destroy us and themselves to prevent their faith from betraying them.
People will give their lives for their ideologies, and they don't choose only the accurate ones to sacrifice themselves for because they believe in the sanctity of their beliefs.

Cautious optimism is definitely warranted and my opinion is cases like Jen demonstrate subsets of differential diagnoses, which is explicitly recommended against in the psychosocial model. Nevertheless, this is significant because their model applied to those cases. It shows that there is a subset out there of people suffering severe chronic disability who could be helped and the "experts" in the field show no interest whatsoever.

Could not more blatantly show they are charlatans. So maybe they will try to score a goal, but it will yet again be an own goal.

As i said earlier (or was it another thread) lies and doublethink will work until the tide turns.

Exactly, so being diagnosed with CCI does not necessarily mean that there is a significant craniocervical problem ('CCI').

This is about creating doubt.

My tentative and very speculative hypothesis (sorry if some don't like these!) is that Jen and Jeff's recovery may actually have been due to viral clearance brought about by the CCI/AAI surgery.

In both cases, their POTS immediately resolved after surgery (POTS is objectively measurable). POTS is due to autonomic dysfunction, so it seems that the surgery instantly fixed the dysautonomia. I suggest the mechanical brainstem pressure may have been impeding autonomic nerves, causing dysautonomia.

But the ME/CFS symptoms took longer to clear, weeks to months.

New research indicates that the immune response is controlled by both the sympathetic and parasympathetic nervous systems, so my speculation is that the instant resolution of dysautonomia after surgery may, in turn, have caused immune function to improve, thereby clearing viral infections (and/or resolving possible exaggerated or dysfunctional immune responses to these infections), thus putting ME/CFS into remission.

We can't even conclusively prove viral load is part of ME, its likely its somehow related but how and why we have no verification yet.

However I do think if any ME advocacy organisation were to give prominence in advocacy to any hypotheses based on a few cases, that makes them no better than other advocacy organisations that promote, for example, LP as a cure for ME based on a few cases, or ME organisations that publish stuff on their websites like 'some patients find graded exercise therapy helpful'. I think that undermines our efforts to be taken seriously by politicians and scientists.

What?
The big difference is that they sell a specific piece of obvious fraud vs our mention of you might have this and it helped so and so. We are not selling the mentions nor are we creating fake science to "back" it up.

 

[Hip]

@Hip it’s actually not the case that my PEM took weeks to disappear. It was gone as soon as I woke up from surgery, just like the POTS, but came and went with post-surgical swelling. (I am not going to elaborate on this right now but will in future posts.)

OK, that's interesting.

I understood it took many months for your ME/CFS symptoms in general to disappear after surgery (although Jeff's disappeared after only a few weeks), but I did not realize that the PEM symptom disappeared immediately post surgery.

The first thing that comes to mind is reports from a few ME/CFS patients taking the parasympathomimetic drug pyridostigmine, who observed a large improvement or even elimination of their PEM. This suggests there may be some link between PEM and the parasympathetic.

So perhaps the instant elimination of PEM after CCI/AAI surgery might be explained in terms of parasympathetic nervous system function restoration?

 

[Roy S]

Just wanted to chime in to say one thing, maybe two!

I’m not evading questions. There’s this thread, the PR thread, 400 emails in my inbox I haven’t responded to, a few hundred reddit comments, FB comments, Twitter mentions, etc. I am trying to answer as many questions as possible and so am erring on the side of answering what is easy to answer quickly and collating more complex questions for possible future articles, which are a much better format for presenting information. I also tend not to answer questions that have already been addressed in my previous Medium posts. I know it’s a lot to read and I don’t expect anyone to dive that deep, but it’s there (with more to come) for anyone who wants a better understanding of all of this.
QUOTE]

Jen and Jeff,
I don't think you are evading questions, but I've seen similar things happen in the past. If you had one place for all the available information people are seeking it might help a lot.
FAQ's and all other good questions could be answered well once and you wouldn't have to answer them multiple times. Updates could be added.

About all of my questions have been answered but it took a lot of extra time on most of those platforms to find the info. Finding something again could be difficult.

 

[andypants]

What happens after surgery? Does your head pop out more from neck/shoulders? Can you turn your head like a normal person? Like an owl?

What are the potential complications?

I believe @Mattie mentioned no longer being able to turn his head normally, having to turn his body instead.

One of my greatest fears is that a treatment for ME will be found and it won't work on me and i had something else all along and if it was something that could have treated years earlier those are years i can never get back.

Yup.

I’m so glad Jen brought up conflicting feelings because my instinctive reaction to this story, after being surprised and happy that even one PwME has seen some well deserved improvement, was guilt. Guilt that maybe I haven’t done absolutely everything in my power to look into every possible test and treatment. What if there was something there all along?

Realistically, I have done everything in my power, the power is just very limited. And of course I have a life that needs living, too. What little I have of it Ultimately it gives me hope that some of us actually do eventually come across something that makes a difference.

 

[arewenearlythereyet]

And as someone wrote, it is absolutely right that I came out now because I am out and about in public and don’t want people to think I can do these things and still have ME. Right now I am in Hawaii at a wedding between two PwME that will have many PwME attending. I didn’t want to have to hide or lie and I didn’t want the community to find out about my recovery via rumors. I waited to announce until a) I was reconditioned enough to push myself (e.g, walking 8000 steps in one day, lifting weights for an hour, doing an hour of aerobics, etc. being in loud spaces with multiple sources of sensory input) so I could be certain that the crashing was truly gone, not just that my energy enveloped had expanded and b) the last possible moment before the cat might organically come out of the bag.

First of all congratulations for gaining your remission @JenB ...long may it last. I’ve never done aerobics but can’t quite imagine ever doing that kind of activity. That must be a weird feeling.

I think from what you say ‘coming out” is the only thing you could do. I just wonder though whether elaborating too much on the circumstances and using phrases like “I don’t have ME any more” might be interpreted by journalists etc as something other than what you intend?

Is there a plan to counter the negative press effect, and in particular how do you feel that the Unrest film should be used now ...are there plans for a re-release with further footage/follow up?

Is seems a shame for this powerful and influential piece of work to be dismissed as not relevant anymore since you had another condition (just trying to think like the daily mail...which is quite unpleasant).

Also have you spoken to Carol Monaghan MP about this?

 

[JenB]

First of all congratulations for gaining your remission @JenB ...long may it last. I’ve never done aerobics but can’t quite imagine ever doing that kind of activity. That must be a weird feeling.

I think from what you say ‘coming out” is the only thing you could do. I just wonder though whether elaborating too much on the circumstances and using phrases like “I don’t have ME any more” might be interpreted by journalists etc as something other than what you intend?

Is there a plan to counter the negative press effect, and in particular how do you feel that the Unrest film should be used now ...are there plans for a re-release with further footage/follow up?

Is seems a shame for this powerful and influential piece of work to be dismissed as not relevant anymore since you had another condition (just trying to think like the daily mail...which is quite unpleasant).

Also have you spoken to Carol Monaghan MP about this?

Hi! I appreciate your concern and it breaks my heart a bit.

I don’t think my recovering means that suddenly all this falls apart. Not only am I hardly the only patient in the film, I did in fact have ME (), AND I recovered via a means that is NOT inconsistent with current models of the disease. My CCI diagnosis does not preempt my ME diagnosis (in part because PEM and some of the other ME symptoms are not typically thought to be symptoms of CCI). This is new and strange and frankly wonderful territory, for both ME specialists *and* CCI specialists. I need to think more about this. I don’t think I fully understand what you are afraid might happen.

I/Unrest are also not the focus of current campaigning—British patients are.

The Daily Mail is the Daily Mail. Can’t do anything there but I doubt they will be covering this. In fact, news rarely just happens and it’s not like I am try to pitch media about my recovery. If something were ever to come up, there are experts stateside who could speak very eloquently about all of this.

 

[Jonathan Edwards]

I’m pretty sure that’s the outcome everyone wants. However, I simply don’t think this is that easy. Would this study be done by the neurosurgeons, who are already busy doing surgeries, or would it be done by the internists who sent patients to these neurosurgeons?

It would be very easy - at least in terms of checking the validity of the imaging. The people involved would just follow the responsible path that all medical researchers looking at new treatments should follow. It would cost nothing, other than a little time in the evening collating data and then asking colleagues to review it blind, which used to be part of routine quality control anyway. Then writing a manuscript to a journal.

 

[arewenearlythereyet]

Hi! I appreciate your concern and it breaks my heart a bit.

I don’t think my recovering means that suddenly all this falls apart. Not only am I hardly the only patient in the film, I did in fact have ME (), AND I recovered via a means that is NOT inconsistent with current models of the disease. My CCI diagnosis does not preempt my ME diagnosis (in part because PEM and some of the other ME symptoms are not typically thought to be symptoms of CCI). This is new and strange and frankly wonderful territory, for both ME specialists *and* CCI specialists. I need to think more about this. I don’t think I fully understand what you are afraid might happen.

I/Unrest are also not the focus of current campaigning—British patients are.

The Daily Mail is the Daily Mail. Can’t do anything there but I doubt they will be covering this. In fact, news rarely just happens and it’s not like I am try to pitch media about my recovery. If something were ever to come up, there are experts stateside who could speak very eloquently about all of this.

Yes I understand what you say and I think there isn’t anything wrong with talking about anecdotal experience at all.

However I just think that there is a tendency for the press and media (and the general public) to oversimplify things (e.g. ME is about being tired). We have seen only recently some pretty poor articles that are clearly not well researched and give a misleading impression to the general public and potentially politicians and other stakeholders that we might want to influence.

I’m not sure even when supportive that they have the ability to distinguish the nuances between having one invisible illness let alone two. I fear the tendency will be to go to a black and white position (you no longer have ME ...you got cured, ME is not real it’s really something else, the Unrest film was misleading, politicians have been duped, etc etc.)

I think there is something you can do as a high profile figure in ME advocacy. That is to take control of the narrative of your story with these potential distortions in mind. I don’t think it’s up to British patients to decide this? They will need some sort of coordination and repetition of message as will all the other supporters and promoters of unrest? We also have the support from politicians to manage.

I think that the word remission need to be emphasised wherever possible alongside the potential for relapse ...we have had enough distortions of recovery in the press from both PACE authors and sadly patients and celebrities. Miracle cure stories are a default go to now in the press.

Don't get me wrong, this could be a way of reinforcing clear and meaningful messages if actively managed. I’m just very wary of what can be twisted and manipulated by some people that have a lot to lose. We also have the NICE guidelines being discussed and don’t really want any u turns in support at this critical stage.

There are my worries ... I haven’t even thought about the validity of spine compression or whatever although it feels like this seems to be something that should be downplayed (or powder kept dry) in the press until we have more information. It might be just another blind alley. That doesn’t prevent it being discussed amongst the patient and researcher community though.

I hope you don’t feel, this is pouring cold water on your remission ...which is great news ...I would also say that it would be totally understandable if you wanted to take some time out and just have a bit of ‘normal life’. Even resume your career ...run a marathon whatever...horizons opening over a relatively short period of time must be a bit strange after the years of them shrinking away.

 

[Jonathan Edwards]

I have seen more material from the internet, and searched around a bit more.

I hope I have not been critical of Jen myself and I personally think putting out this story was the right thing to do. The difficult bit is how the community should respond, taking into account both Jen's personal peace of mind and the potential damage that might occur if others are encouraged to undergo surgery that they may not need.

I am not a neurosurgeon but I worked alongside and referred patients to Alan Crockard, who at the time was considered perhaps the best craniocervical surgeon in the world and trained Henderson. I looked after people with CCI.

I have come to the conclusion that I am 90% sure that there is a major scam going on in the commercial pain control sector focused on CCI in the context of 'EDS'. There is promotional material on the net going through all the stuff about upright MRIs and cervical traction tests apparently for 'EDS' CCI in the context of very varied and vague symptoms. But since the estimate is that one person in 75,000 will have this problem there is something not right about the presentation.

The promotional material talks about upright MRI and gives example pictures. The first thing I noted is that the reason for the upright posture is to identify a Chiari abnormality - the cerebellum slipping down through the craniocervical junction. It is not to identify CCI itself. The other thing is that CCI is judged by an angle drawn on the image. The example shown has an angle that is said to be abnormal but the picture does not show any convincing neuropathology. Without knowing more I would be very sceptical of this. The sleep apnoea people have used angles to claim that wearing a prosthesis at night can improve the airway but when I challenged a colleague on this they admitted that the angle can change just by a slight shift in the patient's position. I may be wrong but these look like exactly the sorts of measurement than can be made to look abnormal when there is nothing really wrong.

Note that the estimated prevalence of CCI with EDS is 1/75000 whereas the estimated prevalence of ME is 1/500. Also note that, as far as I know, there are no documented cases of people with ME developing demonstrable neurological damage from CCI. It seems that it has never got bad enough in the last fifty years to produce any irreversible neurological change - not even to produce clinical identifiable hyperreflexia. There are cases of people with cervical stenosis and ME but cervical stenosis is a quite different problem that is very common in older people, some of whom are bound to have ME.

So things do not add up.

What I think may be most interesting about the promotional material is the reference to the cervical traction test. I will do a new post on that.

 

[Jonathan Edwards]

The promotional material on the net says that a definitive diagnosis of CCI can be made from a cervical traction test - where the person is an inpatient and has the head pulled away from the neck for a period of days using some sort of frame.

I do not think this can be a valid way of establishing that ME symptoms are related to CCI. As everyone here knows, ME symptoms can appear to improve very significantly for short periods in all sorts of circumstances.

In the simplest terms we cannot in any way discount a 'placebo effect' from a traction test.

However, I was struck by the possibility that something more interesting might be going on.

The term SEID emphasises the fact that many of the features of ME can be considered as forms of intolerance of stimuli. Light, sound, drugs, food, etc. are environmental stimuli. Exertion is in a sense an internal stimulus. We have several times discussed the possibility that the problem in ME is that the central nervous system cannot process and 'neutralise' or 'file away' continuing incoming stimuli. The problem of unrefreshing sleep would suggest that.

Being connected up to a cervical traction frame is not trivial. You cannot move your head around. I suspect that the effect is a bit like trying to work on something using a mirror or the first day learning to drive - your sensory relation to the world is completely re-registered. Your vestibular apparatus will be providing no input. All your brain's 'predictive coding' based on reflex motor feedback will be blocked.

It strikes me that it is not impossible that immobilising the neck might 'flip' whatever problem the CNS has with sensory stimuli back into normal function. Crucially, this would have nothing to do with there being anything wrong with the neck. Neck immobilisation might induce remission, but through breaking malfunctioning neurocomputational routines, not by relieving any supposed pressure on the brainstem.

 

[Jonathan Edwards]

As always, my chief concern with all these issues is for the safety of children. It looks as if a parent has already taken a child for a standing MRI to be assessed for CCI. This I find very distressing. Even if I am wrong that the whole CCI/ME thing is a scam at least it looks like highly irresponsible clinical management without adequate documented evidence.

It also seems that someone has died from this operation. It is important to note that people die with this surgery not because it is 'done badly' by an incompetent surgeon but because complications can occur whoever does the operation. Alan Crockard had a number of failures.

 

[chrisb]

We can assume that those who have died will be unable to respond to this. What is the degree of adverse response? Will there be people who have had an adverse response who would be able to make their situation known? Anonymously, if necessary.

 

[Suffolkres]

In response to a thread elsewhere talking about Jen's condition pathway and the attendant implications for both patients/families and NHS services,
I wrote

"The other significant factor is her (Jen's) initial acute problem (in addition to her ME/CFS diagnosis) and diagnosis of thyroid dysfunction/disease/thyroid cancer.


Jen is not the first person I know to have followed the pathway of ME/CFS and then to receive this diagnosis of thyroid cancer; after treatment, experiencing a 'recovery' from ME.



This justifies our view that NICE must reconsider it's mantra of 'no more testing'; (and our local East Coast Community Health service ECCH's mantra of 'no ongoing care' and only therapy approaches to their services.)
ECCH 'limitation of it's services' places patients at risk at the end of the day. It’s a Quality and Safety issue as well as a Human Rights and Equality one.


This point was made to Suffolk CCG Governing Body this week....... and justifies our need for a mass complaint against the (BACME) NICE Waveney/Norfolk CCG/ECCH ME and CFS service 'Model"."

 

[lansbergen]

Exertion is in a sense an internal stimulus.

Yep.

 

[roller*]

Jen is not the first person I know to have followed the pathway of ME/CFS and then to receive this diagnosis of thyroid cancer; after treatment, experiencing a 'recovery' from ME.

i thought, mecfs-DIAGNOSE requires normal thyroid values.
otherwise it would be considered a thyroid-disease.

does anyone have a link to the movie unrest, to watch it for free.
cant afford netflix luxuries.

 

[Marky]

Really intriguing hypothesis Jonathan! Something like that would make more sense of the recoveries to me.

 

[obeat]

The promotional material on the net says that a definitive diagnosis of CCI can be made from a cervical traction test - where the person is an inpatient and has the head pulled away from the neck for a period of days using some sort of frame.

I do not think this can be a valid way of establishing that ME symptoms are related to CCI. As everyone here knows, ME symptoms can appear to improve very significantly for short periods in all sorts of circumstances.

In the simplest terms we cannot in any way discount a 'placebo effect' from a traction test.

However, I was struck by the possibility that something more interesting might be going on.

The term SEID emphasises the fact that many of the features of ME can be considered as forms of intolerance of stimuli. Light, sound, drugs, food, etc. are environmental stimuli. Exertion is in a sense an internal stimulus. We have several times discussed the possibility that the problem in ME is that the central nervous system cannot process and 'neutralise' or 'file away' continuing incoming stimuli. The problem of unrefreshing sleep would suggest that.

Being connected up to a cervical traction frame is not trivial. You cannot move your head around. I suspect that the effect is a bit like trying to work on something using a mirror or the first day learning to drive - your sensory relation to the world is completely re-registered. Your vestibular apparatus will be providing no input. All your brain's 'predictive coding' based on reflex motor feedback will be blocked.

It strikes me that it is not impossible that immobilising the neck might 'flip' whatever problem the CNS has with sensory stimuli back into normal function. Crucially, this would have nothing to do with there being anything wrong with the neck. Neck immobilisation might induce remission, but through breaking malfunctioning neurocomputational routines, not by relieving any supposed pressure on the brainstem.

Could this be tested in a clinical trial with neuroimaging? This makes far more sense.

 

[Mithriel]

Byron Hyde discovered a lot of his patients had thyroid cancer but it was dismissed as important because a lot of people have thyroid cancer without knowing it as it is very slowly progressive.

What worries me about this sort of remission of symptoms is that the ME is still there in the background and people do too much and end up worse than before. Many people have had that experience and I ended up housebound and needing a wheelchair after I thought I was cured and went wild - well just doing 20 minute walks but it felt wild...

My own experiences are not uncommon. I had a dreadful experience in hospital but my ME actually felt much better. Lying on a bed all day and getting fed instead of looking after 3 children helped a lot.

When I was diagnosed as diabetic I was given metformin and the results were amazing. I felt great and even painted a tabletop in a few hours. Unfortunately it did not last, after a few weeks i was back to what I had been before the diabetes made me exhausted.

Also Dr David Bell did a study where he looked at how his patients were doing many years after the epidemic. He foudn that a lot of them said they were recovered but that when you looked at what they did they were still very restricted. He concluded that they no longer experienced OI or POTS so they felt better but were still actually suffering from ME. If this operation cures OI then patients symptoms may seem much better but the ME is still going on in the background.