A request to those involved in ME research to indicate their position on spinal surgery

[Peter T]

How can surgeons justify doing this surgery when there are no identified structural anomalies? I understand some people have experienced relief in their ME/CFS following surgery, but we lack any clear evidence that this helps MW/CFS when there are no associated spinal/cranial issues.

Is there no system for evaluating surgical techniques in the same way new drugs need to be licensed? Why are surgeons undertaking this technique not publishing at least case study series?

 

[Trish]

My understanding is that they say they only do the surgery if there are clinical signs/symptoms and scans indicating relevant structural problems, and the signs/symptoms are improved by traction. But there seems to be dispute over whether their measurements really indicate surgery is necessary.

It's high time they published the data from all the surgeries on pwME.

 

[Jonathan Edwards]

Is there no system for evaluating surgical techniques in the same way new drugs need to be licensed? Why are surgeons undertaking this technique not publishing at least case study series?

Medical procedures do not require a license, with all the necessary evidence, in the way that drugs do. The worstvanomaly is for radioactive substances, which somehow got labelled as 'procedures' so have been widely used without reliable evidence.

Surgeons have never been bothered about needing evidence for their procedures. It should terrify people but for some reason surgeons are revered and assumed to know what they are doing.

Some surgical procedures have been subjected to trials - mostly where there is an option of patenting some new prosthesis, where showing your results are better makes money.

This is very relevant to obstetrics, where practice is a minefield and nobody knows basic information about safety or preferred option for lots of things. The public seem to be more interested in 'natural methods' until, of course, they have a brain-damaged child.

As one of my bosses used to say 'if you ask a dog to bark, it will bark, if you ask a surgeon he will operate'.

 

[Jonathan Edwards]

I had forgotten about all this and am not sure I ever saw the MEA statement. I think I did and I think Charles and I were in quite good agreement on this. I don't think I saw the Forward ME minutes. They are quite revealing.

What seems to be pervasively missing is an understanding that what is going on is blatant negligence both from individual health care workers and professional societies. Nobody has suggested stopping doing research. But everyone should agree that unmonitored surgery with no obvious scientific or evidence base and significant major morbidity an mortality is unethical and that should be shouted from the rooftops.

The ME/CFS community has been so badly served. I guess it reflects the fact that at least until now no talented medic would have touched the field because there was nothing to get a grip on scientifically and no respect for patients amongst the profession and the service. ME/CFS 'experts' have been mostly oddballs who had no real idea what they were about, mixed in with straight chancers. That should now change but it has been such a long time coming and it still needs fighting for.

 

[Jesse]

Surgeons have never been bothered about needing evidence for their procedures. It should terrify people but for some reason surgeons are revered and assumed to know what they are doing.

Do you have any concrete example of where this has lead to issues? I obviously see the problems relating to ME/CFS but do similar things happen in more mainstream areas? Performing unnecessary and dangerous surgeries based on no to low evidence..

 

[Jonathan Edwards]

Do you have any concrete example of where this has lead to issues? I obviously see the problems relating to ME/CFS but do similar things happen in more mainstream areas? Performing unnecessary and dangerous surgeries based on no to low evidence..

It is widespread. I had an interesting conversation with an obstetrician who works with NICE. There have been major political battles between obstetrics factions in the UK about what surgery should be recommended. And these are the big number procedures for which we have national audit data. For any procedures performed less often it is pretty much open season, or at least has been over the years.

The classic case was tonsillectomy, which had little evidence of benefit for most cases and some serious complications including childhood deaths. It took a major political struggle to change practice. In rheumatology a lot of surgical synovectomies were done with no good evidence of benefit and significant complications.

 

[Kitty]

People of my mam's generation (born around 90, 100 years ago) had their teeth removed prophylactically in their early 20s. There was a widespread joke about it being your 21st birthday present from the NHS.

Some of those who left it later, like my dad, regretted it. When his teeth were finally removed in his mid-30s, he said it was the best thing he'd ever done.

There is a bit of context: high-speed drills (which I didn't encounter until the mid-70s, though I now know some dentists used them earlier) and local anaesthetics weren't in common use. Dental treatment was more painful, so more people avoided it; there was greater use of general anaesthetic, so more risks.

But all the same...

 

[Sean]

The classic case was tonsillectomy, which had little evidence of benefit for most cases

My family had one of the exceptions, not too many years back. Took a while for everybody required to give permission, we had an old guard v. new guard conflict in professional advice. But after years of nasty treatment-resistant symptoms there were no options left, and the kid improved dramatically and permanently after surgery.