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

At the other forum, there is another update from Mattie. He discusses possibility that improvements he experienced may have been a placebo response to surgery.

 

https://forums.phoenixrising.me/thr...treatment-outcomes.62720/page-19#post-2267285

 

My heart goes out to Mattie.

 

It's just such unhappy news.

 

And yet it is hard to fathom how a placebo effect could itself cause such a dramatic change, even temporarily. Is it possible that instead the surgery provoked some unknown transitory physiological side effect, before things then settled back to how they were before?

 

Ah, sorry, not been keeping up .

 

How brave of Mattie to tell how it is for him, because i imagine there is pressure and investments in that surgery being effective and curative.

And how devastating when the symptoms return, or realizing the symptoms never went away but were brushed off as something else.

 

Sad too to see Mattie putting it all down to placebo, which might not be the entire story. A few people on this thread have mentioned that some changes in response to treatments may not be placebo effects exactly, but rather sort of generalised effects resulting from some sort of "re-setting" of the system. And then with time, the system may slowly revert to the previous state.

Some psychiatric treatments seem to work on this principle, like ECT, insulin shock treatment (and maybe also the nicer ones around now, like TMS and deep brain stimulation). They're not "placebos" as such, but their effects are kind of generic and temporary.

 

I find Jeff's response commentary on his website, to be very inappropriate.

The heading still reads as "Mattie" under my search engine result, but has been renamed "Outcomes" on the webpage.

Jeff again suggests that Mattie's ill health is because Mattie did not have further neurosurgeries after his fusion. (Jeff has previously made the same statements on PR, explicitly about Mattie.)

I think it is not correct for Jeff to make public commentaries about other patients' cases, especially since Jeff is in no way a medical professional, even if he is not explicitly naming the patient.

There is only one patient whose story and outcome has appeared on Jeff's page, and that is Mattie.

Thank you to Mattie for your openness about your experiences. I find it very disturbing to see other patients questioning or just talking over your account of your own health.

To Jeff: Mattie and his doctors are the authorities on Mattie's health. No one, no one should be trying to correct him or his story. No one.

No one should be suggesting that he "hasn't done enough. " We've all been told, insinuated, etc, that we are still sick because we "haven't done enough to get better." We should not be doing that to each other.

 

There are several accounts of placebo surgery regarding osteoarthritis of the knee reported. I'm sure there are others.

 

Best wishes to Mattie. I'm sure it's really difficult to be dealing not just with reoccurring health problems, but also with being part of a public controversy. This is another reason why I think it's really best to avoid any sort of anecdote based approach to treatments.

 

If you follow the link, 1 patient that was reported dramtically improved says she is now 90% housebound and another patient also describes "little progress". A third patient describes his/her me/cfs symptoms as unchanged.

 

Which link?

 

posts 1303 in this thread by tiredsam (top of this page).

 

CCI is frequently recommended to be looked into on Reddit in association with neck pain, for example 8 times in this thread. Threads like this are not uncommon.

 

I was doing some research into migraines yesterday and this morning because of another post, so thought I would mention I again came across the fact that migraines can cause both sinus pain and pressure, and neck pain. According to an ME association article in 2017 migraines are common in ME. There is also a distinct class of headache called cerviogenic headache which can also result in reduced movement of the neck and can develop as a result of many issues, eg pinched nerve. Tension headaches can cause neck muscles to tighten also causing stiff neck. I get all these symptoms also and was the reason I was referred to a neurologist (headache specialist) who I haven’t seen yet.

It would be wise for people to look into these conditions if they can, first, I would think, as it seems there is often treatment for migraines and headaches (including medication/injections), or they can find out if there is a pinched nerve. Edit: What I mean is, according to what I read, a persons neck pain/head symptoms don’t automatically have to be CCI.

 

Moderator note: This post and following posts have been moved from this thread:
A request to those involved in ME research to indicate their position on spinal surgery

I could follow up on these two and maybe Komaroff.

But I think it needs to be addressed as to how several people got completely cured by this surgery. If you can’t address this then it doesn’t matter what these eminent folks say because people will be skeptical of the claim that the surgery doesn’t work.

 

How many people have had the surgery and not been completely cured?