The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Cervical spine stenosis as a cause of severe ME/CFS and orthostatic intolerance symptoms

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Nov 11, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,372
    Likes:
    8,237
    Poster presentation, IACFS/ME 2016 conference

     
    ChrisD, Mel9, MEMum and 15 others like this.
  2. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,860
    So what theory does this study fit into ?
     
    Anju, Chezboo and Luther Blissett like this.
  3. Cheesus

    Cheesus Senior Member

    Messages:
    1,222
    Likes:
    5,476
    UK
    There are some osteopathic interventions, such as the Perrin Technique, that it resonates with. In the Perrin Technique, abnormalities within the spine lead to the breakdown of the 'cranial mechanism', which is apparently responsible for the movement and drainage of cerebral spinal fluid. As a result of this breakdown, the theory goes, there is a build-up of toxins in the central nervous system which triggers chronic sympathetic hyperactivity.

    I have spoken with a number of people who report a lot of improvement with the Perrin Technique, however there are many more who do not gain at all. Perhaps it is applicable to a subset of patients.
     
    sue la-la, merylg and Luther Blissett like this.
  4. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,361
    New Zealand
    Compressing the spinal cord results in lots of different symptoms - including weakness, tingling and sensory loss, poor balance etc etc. I think it's rare in young people, but as you age, you can get bony spurs growing on the vertebrae (osteophytes) which can compress the spinal cord...
     
  5. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    I think what they are saying in effect is that these patients had been misdiagnosed as ME/CFS when their symptoms were actually caused by structural compression of the spinal cord in the neck which resolved with surgery. Looks to me like another condition that should be watched for out in diagnosis. I hope they will do a bigger study to find how prevalent this is.
     
  6. anciendaze

    anciendaze Senior Member

    Messages:
    1,806
    Likes:
    4,650
    Does this remind anyone of Paulo Zamboni's surgery to correct CCSVI?
     
    merylg and Luther Blissett like this.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia

    I have one of those bone spurs (due to osteroarthritis which I have in several places in my spine) in my neck area which 4-5 years ago I was told I'd one day need surgery on it due to the way its facing and that it will compress. It makes me wonder though I treated the osteroarthritis with supplements for a couple of years which got rid of the neck pain and inflammation there, it makes me wonder reading this if it could be impacting my ME.

    :( the more research comes out, the more and more things I can see probably are wrong in my case.
     
    sue la-la, merylg and Luther Blissett like this.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia
    for anyone wondering "The Hoffman reflex has also been used as a measure of spinal reflex processing (adaptation) in response to exercise training. The test involves tapping the nail or flicking the terminal phalanx of the middle or ring finger. A positive response is seen with flexion of the terminal phalanx of the thumb."

    2/3 of those ones had this, how many of us here do have this? (why havent we heard of this before)

    youtube video of this reaction



    (I cant seem to invoke this on myself) . The below on testing is doing it a bit different

     
    Last edited: Nov 11, 2016
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia
    video of findings of someone with cervical spine stenosis and the testing. Hoffmans test from 1:40



    Ive been diagnosed with having severe hyper-reflexia (dr almost got kicked in face when testing me as my leg jumped up full expension when hit with little hammer , 90 degree) .. though I dont know if I currently have it.. and myoclonus. I need to find someone to test me for this other thing.
     
    Sea and Luther Blissett like this.
  10. CCC

    CCC Senior Member

    Messages:
    368
    Likes:
    463
    @taniaaust1 I have messaged you ... Well, I think that's what I've done :confused:
     
    Paintmyturquoise likes this.
  11. Chezboo

    Chezboo NOT MY BOARD

    Messages:
    55
    Likes:
    391
    I had never heard of the Hoffman sign but it appears I have it. Guess I can add it to my very long list.
     
    Paintmyturquoise and taniaaust1 like this.
  12. nandixon

    nandixon Senior Member

    Messages:
    822
    Likes:
    2,049
    Inflammatory cytokines are generated with compression of the spinal cord. Perhaps these cytokines are similar to those produced with other ME/CFS triggers (e.g., viral, etc), and perhaps those cytokines are mediating the disease.
     
  13. anciendaze

    anciendaze Senior Member

    Messages:
    1,806
    Likes:
    4,650
    Just want to mention that MS is strongly associated with weakness in the legs, and Dr. Zamboni has found some patients with what he call CCSVI who improve dramatically after surgical correction. This is clearly not a general treatment for MS, but it raises the question of how many "MS" patients actually have spinal stenosis in the lumbar region, in addition to those with restriction in the spinal cervical (neck) region like these patients. A second question has to do with autoimmune disease triggered by sterile cell death due to ischemia. How common is such a thing?

    One reason we have no official etiology for MS could be the confounding effects of mixing cohorts with different problems.
     
  14. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447

    I interpreted them as saying that the cervical spine problems are something that should be considered but that having problems with the cervical spine doesn't necessarily negate a diagnosis of ME. If there is something treatable that will improve patients' quality of life, let's do find it.

    A(t least a) few ME specialists regularly test Hoffman signs, reflexes, etc. but the authors seem to think that all those who treat ME should check these things. I wonder if they have suggestions on how often to check them.
     
    Paintmyturquoise, Webdog and Chezboo like this.
  15. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,197
    Likes:
    4,390
    The improvement on SF-36 was very very slight, they were still severely ill.
     
  16. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    I thought so also so I queried Rowe who said they did not norm the SF-36 (to be x/100) so the results were 30 out of 30 and 26 out of 30.
    They need to make this clearer.
     
    MEMum, Marky90, nandixon and 2 others like this.
  17. melihtas

    melihtas Senior Member

    Messages:
    107
    Likes:
    310
    Istanbul Turkey
    Indeed there is inconsistency between SF-36 and Karnofsky scores.

     
  18. melihtas

    melihtas Senior Member

    Messages:
    107
    Likes:
    310
    Istanbul Turkey
    Thanks for clarifying, now this paper gives me more hope than any other therapy options. I have already made an appointment with a neurosurgeon for next week.
     
  19. anciendaze

    anciendaze Senior Member

    Messages:
    1,806
    Likes:
    4,650
    A central problem for these patients seems to have been orthostatic intolerance, and SF-36 scores seem to be almost independent of OI. In fact, I would hazard a guess that many measures of health have been designed to exclude OI on the grounds that patients can do things if they push themselves, they just don't want to.
     
  20. melihtas

    melihtas Senior Member

    Messages:
    107
    Likes:
    310
    Istanbul Turkey
    Why do you assume that their central problem was OI? According to the paper, they were clearly diagnosed with ME/CFS.
     
    MEMum likes this.

See more popular forum discussions.

Share This Page