Jen Brea: My ME is in remission

I brought it up with a rheumatologist (when discussing hyper mobility, POTS etc as well as ME) and he had me turn my head a little from side to side and up and down and when nothing happened, symptom-wise said he thought it highly unlikely and even if it was that, that i wouldn’t want major surgery like that and i probably wouldn’t feel any better afterwards anyway. It was a bit dismissive. It probably isn’t CCI but I don’t feel that this ruled it out! Apparently you need an upright MRI which is very rare in the U.K.

I don’t think it really changes Unrest. It only highlights that we need much more investigation, research etc to understand what’s going on and for who. It’s still the personal story of someone who met ME criteria, and several others who are still very unwell.
 
NelliePledge said:
Thanks @Binkie4 im glad your GP was fine about it.
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Thanks @NelliePledge
If I had been pushing for investigations like the upright MRI with the right sort of flexion images, I don’t think he would have been cooperative but he seemed willing to consider that I might have a mild type. He said his other patient was more severe. I was just surprised that he knew the neurosurgeons who operate on these cases, only 3 in the world who are reckoned to be good.
 
TiredSam said:
Wonderful that Jen has managed to get her life back.

Can't help wondering whether she had a blood transfusion as part of any of her surgeries?
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Andy said:
Or antibiotics. Part of my pondering on my improvement is whether it's down to the course of antibiotics that I had - I'd never had any antibiotics at all prior to my recent gallbladder issues.
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Alvin said:
Anesthetic :cool:
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seems the forbidden question, sort of
am wondering: benzos, painkillers

so, meds before, and
meds related to surgery: before and during the 12 months period, till reporting point
 
the other thing i not really understand is, that these ppl were not sick very long. a few years.

then the spine-related issues must have happened in light-speed.

but nowhere else in the body ?
shouldnt that happen even earlier ? (e.g. artificial knee, hip replace... ?)

why does it hit the upper spine part ?
 
i havent read the medical papers that seem to explain the improvement on ebv-titers...
but i understand, it can be explained that the INSTABILITY caused HIGH titers.

however, the procedure is very intrusive to the body.
in addition, new material (3rd party or own bone-stuff) is brought in.
would this all may trigger an extreme cascade of immune-reaction or immune-suppression ?
perhaps, more white blood cells (reds, blacks, no idea) are formed ?

so i was wondering, if the INTRUSION (not its result) causes LOW titers ?
 
@roller*

Your point about own bone or alternate - I've had both for a procedure - only 100 percent own bone worked. Of course we don't know if substitute bone would work in general for pwME.

ETA: perhaps not a huge need to study whether pwME do better with own bone versus substitute bone in medical procedures, however, research regarding this question may prevent problems.
 
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Dechi said:
Yes, I do and I’ve been thinking this for a while. This would fit the « CFS/umbrella » diagnosis, where CFS is a fit because nothing else can be found. If you keep digging, you might find the cause, treat it and cure it, as happened to Jen.

But it’s not typical ME (my thinking is in line with Dr HYde’s definition, among others), which is simply not treatable at the moment.
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And further highlights the foolishness and unethical nature of MUS guidelines.

Under this model neither Jen nor Jeff would ever had had that surgery. They would have had lifelong severe chronic disability with no hope of improvement, all while being told it's their fault all along. Those guidelines assume there is no such possibility and that misdiagnosis is harmless. This is demonstrably false and completely unacceptable.

And with the few who have ME on their death certificate, it shows that either ME can be fatal, which should change things, or that misdiagnosis as ME under MUS guidelines is potentially fatal, which is completely immoral.

The presumption of harmlessness from psychosocial guidelines has been shattered. Not that it was ever credible but evidence is mounting of how dangerous and misinformed they are.
 
Arnie Pye said:
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?
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CCI is about as controversial as ME and there are barely a handful of qualified surgeons.

Possibly this may raise its profile and change that for the best, but it would be impossible to mass screen millions of ME sufferers and deal with any % who would be found with this condition. Lots of work ahead no matter what.
 
Jonathan Edwards said:
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.
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Thanks for clarifying that, I thought those were symptoms that could arise from disruption to transmission of nerve impulses
 
Inara said:
Yes, it's a common experience for me, too.
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When I visited the sleep clinic and tried to explain that I feel exhausted but not sleepy it was like hitting a divide by zero error. I may as well have been levitating something with my mind.

Sorry I don't follow your textbook understanding of fatigue, whatever is meant by that by sleep professionals. Nevertheless here I am.
 
rvallee said:
CCI is about as controversial as ME and there are barely a handful of qualified surgeons.

Possibly this may raise its profile and change that for the best, but it would be impossible to mass screen millions of ME sufferers and deal with any % who would be found with this condition. Lots of work ahead no matter what.
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Is this a procedure that grew out of the need for the Ehlers Danlos patients? Accident victims also, for sure. But why is it "controversial?"
 
Marky said:
Thanks for clarifying that, I thought those were symptoms that could arise from disruption to transmission of nerve impulses
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They can, but not at the level of the upper cord and brainstem. Neurology is specific.

rvallee said:
CCI is about as controversial as ME and there are barely a handful of qualified surgeons.
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CCI is not controversial. It is standard neurology. I looked after people with CCI. All medical students know about it. Neurosurgeons throughout the world deal with it.
 
Specific symptoms further improved with mold avoidance, Valcyte, Mestinon and Fludrocortisone.
... shifted from the “severe” end of the spectrum to “moderate.
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then she goes from moderate to resolved with either of 2 surgeries (from link above):

resolved by Craniocervical Fusion Surgery (2018)
- marked, rapid physical and/or cognitive fatigability in response to exertion
- post exertional symptom exacerbation
- post-exertional exhaustion
- recovery period is prolonged
- low treshold of physical and mental fatigability

- difficulty processing information
- short-term memory loss
- headaches (aching behind the eyes, back of head)
- neurosensory and perceptual (sensitivity to light, noise, vibration, odor, touch)
- motor (muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia)

- flu-like symptoms
- susceptiability to viral infections with prolonged recovery periods
- gastrointestinal tract (nausea, abdominal pain, bloating, ibs)

- cardiovascular (e.g. inability to tolerate upright position, orthostatic intolerance, postural orthostatic tachcycardia, light-headedness/dizziness)
- respiratory (e.g. air hunger, laboured breathing, fatigue of chest wall muscles)
- loss of thermostatic stability (e.g. subnormal body temperature, recurring feelings of feverishness with or without low grade fever, cold extremities
- intolerance of extreme temperatures

- difficulty initiating movement
- neck stiffness (episodic)
- pressure behind my eyes
- brain inflammation / brain fog
- right arm weakness, numbness; right face numbness
- central apnea (began only after june 2018 thyroidectomy)


resolved by Tethered Cord Release Surgery (2018)
- significant pain
- motor (muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia) (is also above)
- bilateral leg weakness, numbness, tingling and fatigability
- inability to keep feet on ground when sitting
- restless legs (especially when legs straight at night)
- ability to stand upright and walk without feeling ill (distinct from OI)
- difficulty lifting objects of even negligible weight

still resolving
- sensitivities to food, odors, medications or chemicals (classic mast cell activation syndrome symptoms)

did never have
- sleep disturbances
- genitourinary (urinary urgency or frequency, nocturia) = "classic tethered cord symptom"
 
Jonathan Edwards said:
They can, but not at the level of the upper cord and brainstem. Neurology is specific.

CCI is not controversial. It is standard neurology. I looked after people with CCI. All medical students know about it. Neurosurgeons throughout the world deal with it.
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Although I bow to your vastly superior medical knowledge Jonathan, over the last couple of weeks I've watched a few presentations by neurosurgeons with expertise in Chiari and CCI. They seem to collectively believe that a whole range of symptoms that are commonly seen in ME - including headaches, balance issues, audio and visual disturbances, brain fog, exercise intolerance, gastro-intestinal issues, sleep disruptions, tachycardia, autonomic disruption - are also frequently seen in CCI cases, where they can be directly attributed to the damage done to the brainstem by the excessive movement of hypermobile joints.
 
Stewart said:
over the last couple of weeks I've watched a few presentations by neurosurgeons with expertise in Chiari and CCI.
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I would be interested to know who they are. Unfortunately, I think surgeons will collectively believe anything that gets them cases to operate on. Until the litigation kicks in.

How would they know if all these symptoms were due to CCI? The neurology is anatomically wrong so they must have other evidence. People saying they are better after operations is not necessarily a reliable source of evidence. None of the people I looked after with CCI from arthritis had any of these ME-like symptoms that I remember.
 
When more is learned about ME, we will be able to more confidently look back and see what research pointing to underlying causes was willfully ignored for decades. Perhaps this might include the brain stem hypoperfusion findings from 1995. And, who knows what other researchers may have been onto something very important for ME, but their work did not gain traction, or continued funding.
 
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