The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Also just tried to read this. There is quite a bit of technical jargon that assumes the reader knows context to the various measurements. I will need to familiarise myself with detailed physiology to understand half of it.

I would be amazed if a large proportion of patients would spend the time doing this sort of research to understand the context of comments made. I suspect that could lead to misinterpretation by some. I guess that’s why we should listen and learn from subject matter experts.

 

Moderator note:
Some replies to this post discussing the LP have been moved to this thread
https://www.s4me.info/threads/under...cess-and-the-approach.4888/page-5#post-174529

Ah, but you need to pick your expert carefully...


Mr Parker’s scientific opinion on the Lightning Process and XMRV (from my archives):

Slide presentation: xmrv cfs | 8:30 mins

17 slides, no audio

https://www.youtube.com/watch?v=R8GCp00KC78

thephilparker | 27 October 2009
Phil Parker, designer of the Lightning Process discusses the latest research into the xmrv virus and cfs

@ Slides 13 and 14

How this relates to the Lightning Process​

• If we assume that on average:

– 67% of the cases of CFS clients that are
seen with the LP have the XMRV virus,

– And according to our findings 85% of
these people recover their health in the 3
days of the LP programme

LP and XMRV

• The LP must be assisting these people to
deal effectively with that infection in some
way (we would hypothesise it is a
resumption of good immune and neurological function)


(With apologies for OT)

 

Do you have some data that I am not aware of that supports this supposition? Do mean to "You think this," or "I am speculating"

 

How is returning to full-time school or employment not an objective metric -- and probably among the most meaningful metrics at that? Even if the person is still having to rest the minute he/she gets home, to go from bed-bound to full-time employment is a remarkable improvement.

In the nearly twenty years since I was diagnosed, I've seen any number of recovery stories after all sorts of treatments, including GET and LP. Indeed just after I was diagnosed, the community was all abuzz with talk of surgery for Chiari malformation as a cure for ME/CFS (the more things change, the more they stay the same). And after each of the recovery stories, the first thing many in the community do is immediately claim that the person did not have "real" ME, regardless of how real his or her ME sounded. And what is "real ME?" I suppose we would probably say something along the lines of it involves post-exertional malaise -- a worsening of a variety of symptoms that may people will describe as flu-like or a heavy, leaden feeling -- that often occurs 24-48 hours after exertion. Except until we know the pathophysiology of the disease, it's impossible to say what "real ME" is. I mean, if you go exclusively by symptoms, what is "real" MS? We can say what symptoms are generally not associated with ME. But if the patient claimed to have PEM along with the rest of the symptoms we associate with this Damn Disease, it's hard to say he or she didn't have real ME, though he or she may have symptoms of other diseases in addition to ME. If we believe patients when they say they are sick, we must also believe them when they say they are well unless there is clear evidence to the contrary.

You will note the preposition I used was the agnostic "after" treatment, rather than the explanatory "because." I cannot say what made them well. All I can do is speculate as there is no medical explanation possible at this time. @JenB 's comments above about the problems with recovery stories are important, and I appreciated them very much. And she appears to have ample evidence that she is recovered -- not that she owes us this evidence. But she has not provided a medical explanation about how she recovered that makes physiological sense. Instead, she and @Jeff_w have given us speculation, which is all they can offer given that no medical explanation is possible at this time. That is the crucial distinction about which we all keep talking past each other in this thread.

Again, there is something primally painful for humans when it comes to saying "I don't know." We despise lacunae and desperately want explanation -- especially when without one we remain sick, in pain, and shut out of life. But as painful as it is, when it comes to science, as Jen herself said in her TED Talk, "'I don't know' is a beautiful thing."

 

I am speculating and would bet a reasonable amount of money on it.

 

Absence of data can in itself be compelling.

We believe that smallpox has been eradicated in the wild because nobody in the last ten years has arrived at a medical facility with the characteristic vesicles on the hands and feet. It is hard to know what better data could be gathered in practice.

Hundreds of thousands of people have been diagnosed with ME/CFS by competent physicians, including some neurologists, who have not identified any evidence of medullary compression. If CCI was a common cause of ME/CFS symptoms we would predict that perhaps 10% of long term cases, and at least 1%, would show neurological signs of medullary compression overt enough to be unmissable, to be documented in terms of medullary deformation on MRI and a legitimate basis for hundreds of negligence claims. There have been none as far as I am aware. As far as I know none of the 2000 members of this forum have mentioned that they have neurological deficits characteristic of medullary compression.

We would have to postulate that the sort of CCI that causes ME/CFS symptoms is quite different from all other forms of CCI in that it goes as far as causing certain non-specific symptoms but never goes far enough to produce objective signs. That is possible but certainly 'unlikely'.

 

I think one thing that occurs just reading the various recent posts is that when you have had to put up with symptoms for a long time that are so diverse and limiting and when you find an answer to explain some of it that it might be tempting to think that this is the answer to everything.

An example from myself. I’ve had a neurological condition since a child long before I got diagnosed with ME. Some symptoms could be thought to overlap.

I could think several things about the two conditions:

1) My original illness may be connected to me getting ME in some way
2) some of my symptoms that I thought were attributable to my original condition may have actually been ME all along
3) I don’t have ME at all and this is just some sort of weird progression from my original condition
4) They are both completely separate and it’s just coincidence that I have both

There is a bias I think to try and go for option 1, since it appeals to us to neatly sew everything together...I think that’s quite natural.

In my case I think they are both quite distinct but I do sometimes think about the various options. I just keep telling myself that I have had two distinct diagnoses, they have different criteria and in the first case, treatment that was sort of effective.

I can’t help thinking that all this speculation would rapidly diminish if we had a reliable biomarker. It just makes me more certain that establishing diagnostic criteria has to be our top priority.

 

Right, but smallpox has pretty clear, famous and frankly easy to spot symptoms. I don't really think that is a fair comparison.

So let's walk through your logic above. "Hundreds of thousands of people have been diagnosed with ME/CFS by competent physicians" this is true.

"including some neurologists" As far as I know there is no data showing how many of the patients have been seen by neurologists. It also would be accurate to say, "we have no idea how many CFS/ME patients have been seen by neurologists".

This is in turn followed by "who have not identified any evidence of medullary compression". The question is, were/did they look for it? I think it is the general (anecdotal) experience of many CFS patients that they get in front of a specialist and are in effect ignored. Jeff provides a great narrative of this in his story that certainly resonated with my sisters experience when dealing with specialists over the last 30 years.

By linking these statements together you give an impression to the reader that I feel can't be robustly supported in a way that is more than your opinion. I get that your opinion is likely more valuable than mine in this context but it is still that.

Why would we predict 10% or even 1%. If I come to someone and say, I got a virus and how I have (the list of symptoms associated with CFS) would a neurologist then in turn look for those symptoms? How many people see the gorilla walk through when the people are playing basketball? Especially given the fact that a good deal of ME/CFS advocacy is still focused on educating doctors that it is even a real condition.

For the sake of all of the patients that have been so badly treated, I really hope at the end of the day that money flowing to them in the form of negligence claims becomes true! Do you think if Jeff and JenB stay in remission they have a case?

As to none of the members (or former members) of this forum having the neurological deficits characteristic of medullary compression... So if I understand you correctly, you are saying JenB and Jeff had none of the typical deficits yet were in turned diagnosed and seemed to have had their symptoms reduced, correct? How does that fit with the rest of the numbers reflecting the likely proportion of patients? Why did no doctor who saw unrest look at JenB and go, obvious medullary compression! (I am seriously interested in why that might be)

 

Dear @Pondering,

If you want more detail of my thoughts on this please read carefully through the posts in the thread, where I hope the answers to your questions should be reasonably clear. I do not want to talk more about this issue because it inevitably has implications for individuals. I found it very distressing having to say what I have said so far because of the potential impact on those individuals and their loved ones. I think some very useful thoughts have come out of this thread that may even lead to a clearer understanding of what is really going on in ME but I don't think going over and over the same arguments about the clinical presentation of CCI, which, when of known cause, bears no resemblance whatever to that of ME, is going to help.

 

I hardly think they were neglected? I would be more concerned about the "ME specialists" who prescribe years of antivirals, antibiotics and useless supplements that harm their patients based on their own pet theories.

Not all medical conditions are straight forward and easy to treat.

 

Forgive me for jumping in, have not been following the thread. But just saw this tweet, and thought it might be of interest for others.

https://twitter.com/user/status/1138518810997084160

 

https://twitter.com/user/status/1138565574072475648

 

This is truly perplexing. Why is Ron Davis giving credence to any connection of ME to CCI? By asking for blood samples it appears that he is. It would appear that donation money is going to be wasted on this. WTF. I feel like I can’t trust him anymore.

I feel bad for Jen as she appears to have damaged herself. I hope she doesn’t claim her ME is back when it’s obvious a structural issue has occurred and caused exacerbation of symptoms caused by CCI.

 

I would like to find out whether there is a connection or not.

 

Doing bloodwork doesn’t make sense to me. What is he looking for? It doesn’t make sense that neck surgery would eradicate viruses or make antibodies disappear. How would one say they are connected just from bloodwork. None of this makes sense to me (and many others) and why Davis is doing this is beyond me.

I think it is irresponsible of Davis to be doing this right now. More disappointment, more wasted money. I also believe Davis should publish online what exactly he is looking for, why, and based on what since he is using donations to carry out his research.

 

He will probably do the nanoneedle test before and after the surgery.

There is a lack of evidence that viruses and antibodies are the cause of continued ME so that is not a good argument.

 

I am not saying that viruses and antibodies are connected to ME. I believe JenB said her bloodwork was much different after surgery related to viruses or antibodies or something. I thought the nanoneedle stuff has been put on the back burner. That being said, unless Davis does some kind of controlled research related to bloodwork, no statements of connection can be made. I am surprised a ‘world renowned’ researcher at Stanford is doing something so reckless.

 

A knowledgeable ME doctor would advise against any strenuous exercise in the 'recovery' phase. My ME doctor advised me 28 years ago to 'do nothing' when you feel improvement, and to wait a minimum of one year, and to keep it moderate with adequate rest inbetween.