Jen Brea: My ME is in remission

@Trish, @Jonathan Edwards @ScottTriGuy @adambeyoncelowe @dave30th @Hutan @Dolphin @JaimeS @Andy : same with this post - just in case it isn't read - I wanted to get this info out there - it's late in the UK right now.....Thank you for reading this!


Page 80 of the Canadian Consensus Criteria says: " A longitudinal study to determine whether a specific pattern of functional MRI abnormality , and the findings of significant hypoperfusion and hypometabolism in the brain stem and other regions of the brain warrant further study. Measuring changes in brain activity circulation patterns associated with various physical and mental activities will greatly improve the value of these observations. MRI scans of the brain and cervical spine should include foramen magnum cuts to determine the incidence of cervical stenosis or Chiari I malformation in ME/CFS patients."

ETA: from MEPedia:https://me-pedia.org/wiki/Craniocervical_instability
"There have been anecdotal reports of people with ME who meet the International Consensus Criteria (ICC) who were ultimately diagnosed with CCI/AAI and/or Chiari malformation, a related condition.[1]" (emphasis added)

The CCC was published in 2003:https://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

 

There seems to be a lot of variety amongst the symptoms and experiences of patients classed as having ME/CFS. I'm not sure anyone knows what 'typical' ME is right now.

 

I’ve now read Jen’s blog and I thought it was well written. She says a lot of the sort of things that I have imagined I might say if I was ever recovered – differentiating between feeling well but exhausted and deconditioned, and the awful feeling of having ME and PEM. It makes such a nonsense of the ridiculous deconditioning theory.

Meanwhile, I was pleased that Jen recognised in the tweet below that some of us might have mixed or ambivalent feelings. That is certainly true for me, and I appreciate her sensitivity to and awareness of such feelings:
https://twitter.com/user/status/1130566418146050048

https://twitter.com/user/status/1130566883676049408

 

It comes across as quite mature and thoughtful the way Jen has announced her news. I imagine 100s of alternative ways of announcing the news which could have been much more damaging to the M.E. community. Her experience could be twisted by the unscrupulous or tunnel visioned. But with a collection of smart, motivated researchers on our case I think it’s much more likely that now insults to the brain stem won’t be overlooked even as progress is made in other areas.
My desire is that no one be left behind. I hope that if a treatment is found for metabolic issues, research on gut, immune system and brain stem inflammation will keep progressing until every subgroup of ME has a cure.

 

I wonder how much the various surgeries Jen has had actually cost her. Are the surgeries something that only the rich can afford? In the UK are they something that the NHS has ever carried out?

 

As this is something that is usually found in children, I would have to think that the surgery would be available in the UK.

 

The symptoms, though, of 'Tethered Cord Syndrome' don't sound anything like ME.

​

 

More or less, i wonder if she had CCI and not ME at all and that the CCC and ICC are just not good enough to differentiate between the two. Or she has ME and its in remission somehow is also a possibility.

I think this is a good idea that should be investigated thoroughly (if we can somehow pull that off)

I do have some concern that some people will try this surgery out of misguided optimism and and not improve or even get worse. The need for more research is clearly indicated.

Agreed on all counts.

@JenB your thoughts on this thread?

 

@Alvin

My post at the top of page 3 indicates Chiari Malformation, noted in the CCC as a possible cause of ME is apparently related to @JenB's CCI/AAI.

 

I noticed that but its easy to ascribe something without sufficient basis. I would readily support more research into this area. It may also be a symptom and not a cause. Or it may be a cause and ME the symptom.
For example there is a great deal of overlap between Parkinsons and Lewy Body dementia. They may actually be the same disease but separated by severity or part of the brain affected or rate of acceleration (not to mention that about 3/4 of Parkinsons patients end up with dementia). However we cannot conclusively prove any theory at this point, just that there is a great deal of overlapping evidence that we cannot make definitive conclusions about given our current state of knowledge of either disease mechanisms and research findings.

 

I am very happy to hear that Jen is better.

As I have said before, there is no similarity between ME and the presentation of CCI or related cervical cord problems. (Cervical cord compression does not produce pain or fasciculation or brain fog.) I prefer not to speculate on one person's history. I don't think Jen's situation has any real relevance too PWME in general.

 

Maybe there is missed knowledge, because Jen had a diagnosis of ME and then CCI was found, and a CCI surgery helped. Obviously something is missing. So there's some theoretical stuff, and then there's an observation. Observation and theory don't fit, so there needs to be some work done, like more observations and theory adjustments or changes - well, science.

It's no use to say "It can't be possible". It happened.

 

Happy for Jen and her recovery. Quite remarkable to read her letter and what she is able to do today.

Have absolutely no idea what to make of it in regard of ME? More confusion, but it surely state the fact that there are so many different things labeled under the umbrella?

Hope she stays along for some advocating, which she’s done in a good way. But would understand if she as other few recoverers heard of would literally run away. There must be hell of a lot of catching up to do.

 

I had this exact experience with a neurologist, i was describing my sleep symptoms (i forget which symptom, it was years ago) and he said thats not possible. And i was like well here i am.

 

I wonder if the NIH intramural clinical study attempts to rule out CCI. I assume this would require MRI/CT scans of this area of the head/neck.

 

You've tagged me, and others, in this and another post. I understand you are trying to draw it to our attention but I don't understand what action you are wanting us to take?

 

In the US, most insurances will pay it, in Europe they won't (I don't know if private insurances would, though). And yes, these kind of surgeries are very expensive.

 

I think you must have inadvertently joined some exclusive club?

 

@Andy

Thanks - just wanted to make sure some read it - no action in mind - just making a connection to older studies in the CCC about brain stem issues and Jen's surgery.

Apologies if this was confusing.