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Thanks. Do you mean that the definition of the consensus statement I quoted is different from what you have read elsewhere about cervical meduallary syndrome? Or do you mean that the symptoms I listed are actually not so different from ME/CFS as I suggested in the text?

Hi @Denise. Just to be clear: I didn't write that they claimed to have recovered from ME/CFS. I used the terms "recovery story" or "recovery process" to describe what they wrote in blog pots and on social media. I don't think this is inaccurate. Jenn wrote: "I believe I am on my way to a full...

I would immediately like to add some caveats to the information I posted above: A) I am obviously no expert in these complex surgical procedures and it's possible that there are some inaccuracies in the text above. I simply did some research and read some studies. I hope the information I...

References [1] Ashafai NS, Visocchi M, Wąsik N. Occipitocervical Fusion: An Updated Review. Acta Neurochir Suppl. 2019;125:247-252. [2] Bobinski L, Levivier M, Duff JM. Occipitoaxial spinal interarticular stabilization with vertebral artery preservation for atlantal lateral mass failure. J...

Concerns about craniocervical instability surgery in ME/CFS CCI/AAI has little in common with ME/CFS Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial...

Strange, I didn't really get a notification it was published, so you knew it before me. I would like to thank @Andy and @Trish for helping me with proofreading and finetuning the letter. Very helpful and very much appreciated. I'm glad that the authors (Coetzee et al.) turn out to be good...

Thanks very much Stewart. I do note that all three articles are from the same person: Fraser C. Henderson. A quick search on Pubmed shows that there aren't really that many studies on this subject. Could @Jeff_w perhaps share some of the publications that made him think CCI might explain ME...

Could you share some of the videos and papers about CCI that suggests this? Many thanks in advance!

ME/CFS patients will probably ask a lot of questions about this. Some are desperate and willing to try everything. So it might be a good idea to gather some reliable information about the risks of these kinds of surgeries. If I remember correctly Jennifer herself indicated that this was not...

https://www.clinicaltherapeutics.com/article/S0149-2918(19)30071-2/pdf

I think we'll just have to wait to know what the implications are of this. On the upside this can be seen as a story of hope: that somebody who has been severely ill for years with the same diagnosis and symptoms as many of us, can make it to what seems to be a full recovery, that is pretty cool.

Yes, you're probably correct - that sentence does seem to suggest something like that. Sorry. I was a bit confused by the term 'effort'.

Thats an interesting thought, but if I understood correctly the authors do not argue that the similar MRI scans are an indication of similar effort. Or did I miss something?

I think they measured fatigue with a visual analogue scale before and after the cognitive tasks. ME/CFS patients had more fatigue at each timepoint but the increase in fatigue following cognitive challenges was the same in controls. So the cognitive tasks did not increase fatigue more in the...

I remember watching Brian Wallit's talk about this at the NIH conference. The figures he showed seemed to put the high percentage of rare diseases in the intramural study into perspective. See...

This is a comment to the paper: Flatt et al. (2019) The invisible burden of chronic fatigue in the community. I've already posted it in the relevant thread...

I think their studies started with noting a remarkable improvement in approx 7 ME/CFS patients who received chemotherapy for cancer. I think cyclophosphamide and rituximab were both part of these treatments that seemed to cause a remarkable improvement and so both were researched.

Yeah, I agree with this. So far there were only some very small studies by Black & McCully and Friedman who both seemed to indicate that there's an activity ceiling for ME/CFS patients. https://me-pedia.org/wiki/Glass_ceiling_effect

I would recommend interviewing @JohnTheJack, @Robert 1973, @Graham @Tom Kindlon, if they would be willing to do such an interview. They have had ME for a very long time and have a lot of wisdom to share about living with such an incapacitating illness with dignity. They could explain the...

Don't know about that. Severe deconditioning isn't all in the head, I suppose. Anyway, I don't think saying CFS is all in the head or not is the major issue here. The main problem lies with labeling CFS patients symptoms as unhelpful cognitive responses or behaviors without sufficient...