I am sure I will get my head bitten of for this, but lets try anyway:
My daughter had HPV vaccinations and became unwell soon afterwards. She subsequently had to leave University as she was sleeping 18+ hours per day.
In due course, as nothing else was found, she was given an ME/CFS diagnosis. Fibromyalgia kicked in, and during treatment for that, someone suggested EDS may be an issue. A diagnosis of hEDS was forthcoming, and we searched for help in all corners of the internet.
We came across CCI and its possibilities, resulting in us seeking the necessary scans and a trip to Spain. Dr Gilete examined her, and found AAI/CCI and Jugular Vein compression, for which he suggested C0-C2 fusion would likely be beneficial. Since then, we have discovered Dr Nick Higgins in Cambridge who is interested in IIH as a similarity (symptom wise) to ME/CFS, and he is suggesting Venograms to monitor blood flow to pursue or rule it out.
Neither of these people are saying 'All ME/CFS patients will benefit from this treatment'. I know Dr Gilete has turned down some as not requiring surgery, or would not be significantly beneficial to them. These are all people in a small subset of those diagnosed with ME/CFS, and generally have an hEDS diagnosis resulting in poor ligaments and collagen structure, leading to general skeletal instability characterised by frequent subluxations etc.
Remember that ME/CFS is not defined as such, but diagnosed after ruling out other likely causes, therefore, it follows that people left with that diagnosis may not have the same root cause. My daughters GP has remarked in the past that 'she is not like his other ME patients', but he still gave her that diagnosis.
On that basis, will we seek surgery? Possibly, after evaluating all other immediate avenues. What will we do next? We will try to see Nick Higgins and pursue less invasive treatments first.
If we can't get anywhere, we will look further into the fusion surgery. This is a surgery carried out relatively frequently in the UK and many other countries, with little risk and minimal further issues. The difficulty is doing it on hEDS patients with ligamentous issues. What tends to happen is that instability can develop further down the spine, and further bracing may be required in the future.
Is it worth it? There are documented cases of people walking for the first time in several years after surgery. Did someone die recently after this surgery? Yes, in Spain, a patient died, but they had, I think, the Vascular type, and willingly went into surgery knowing there was less than 50% chance of success in her case, simply so she had a chance at life. Unfortunately she lost, but it was a chance she took.
Why are other Neurosurgeons not looking to do this? Currently, the surgeons that are doing it, are looking at figures generated from different imaging to standard, and looking at impingement on the spinal cord sheath rather than directly on the cord (as I understand it), so the average Neurosurgeon (can you say average about a Neurosurgeon?) would dismiss the patient as being within normal limits.
So why do they not publish results? Well, before you can publish, you must have enough subject matter to formulate a clinical trial. Dr Gilete is expecting to publish late 2020, Henderson has already published, but based on Stenosis. However, Henderson is working on a trial with Malik in the UK, results to be published afterward.
So, as far as I can see, a small subset of Neurosurgeons have identified a small subset of ME/CFS patients who have specific issues that may be alleviated by fusion. The majority of ME/CFS patients will not be affected by any of this, but surely the fact some small part of the ME/CFS pool that can be removed from the pool, means that help and treatment for the remainder will be easier.
By which, I mean, if the current ME/CFS pool is 'polluted' by people that have structural issues rather than the classic ME/CFS issues, any potential research work done on a sample of the pool will have a percentage that will not benefit from something that could benefit the 'classic' issue, and the results will be inadvertantly skewed.
So why am I in this group if I think my daughters issues are structural? Well there is still commonality of symptoms, so ideas in here to alleviate discomfort etc is beneficial to all symptom sufferers. For instance, there is an article in here from a young lady discussing the benefits of her mobility scooter - that would have been helpful to see previously. There are articles relating to nutritional aspects that help fight some symptoms - all great, helpful information that may benefit anyone with those symptoms, regardless of their root cause. However you choose to respond to this, I wish everyone who is fighting a debilitating, under-studied illness the very best of luck, regardless of its underlying cause!
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