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

Other objections aside, I think that, at a minimum, patients who have been ill less than five years should be strongly discouraged from undertaking any treatment with a high degree of risk for their future health.

The reason is that it seems as though some patients experience a level of improvement within the first five years. Dr. Bell said some of his patients "recovered" during that period. I experienced significant improvement in the fourth year of being ill myself.

Five years is a pretty vague guess, though. I wish someone would do some good studies to see how common improvement is in this period and to get a better idea of the timing of this "window."

Someone who has experienced a level of improvement is apt to consider the risks of experimental treatment a lot less enthusiastically than someone who has not, so such treatments should probably not be considered early on.


Also, shouldn't an evidence base be developed first, like proving that these "abnormalities" are more common in symptomatic patients than in healthy controls?
 
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Forbin said:
Also, shouldn't an evidence base be developed first, like proving that these "abnormalities" are more common in symptomatic patients than in healthy controls?
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It is even more basic than that. We need to see some evidence that there are any abnormalities. So far I have seen none on images put on the web. (Other than some pictures of fairly usual cervical spine disc disease of a sort that lots of older people have and which in any case would not affect the brain stem.)
 
I'm not entirely surprised at some researchers expressing an interest in the subject of spinal surgery and ME. It is interesting when we hear that a few people have found their health has improved in unexpected ways after medical interventions.

It was interesting when Fluge and Mella found that some people's ME went into remission after they were treated for cancer with Rituximab.

The thing that concerns me here and should concern all of us is the different trajectory of actions following those interesting observations.

Fluge and Mella were so interested they set up a series of clinical trials culminating in a full scale double blind trial run properly and with long enough follow up to be meaningful. And in the meantime they warned patients and doctors not to experiment outside the trial.

What scares me is that, with the help of social media, and presumably with the collusion of the surgeons involved, patients are being enticed, by people with no medical knowledge, into life changing and potentially dangerous treatment without any clinical trial first to see if that treatment is justified.

So there may be a tiny subset of people with ME who also have spinal structural problems that when treated also trigger a remission from their ME symptoms, but by going about it this way, we will never know whether the association is causative, chance or placebo effect.

What I would expect responsible scientists to do in this situation is yes, of course wish individuals well who have undergone any treatment, but also tell JenB very firmly that the way she is going about her campaign is unscientific, harmful and wrong.

Sorry, rant over.

I'm ranting because I have just gained access to some of the materials JenB's facebook groups provide their members. I haven't read them all yet, but they are far more than the guides to how to find a doctor she said in reply to me on Twitter.

They include guides on how to read scans, offers to read each others' scans, and how to self diagnose with various spinal disorders, how to do traction, and a protocol of some sort. Yes, they add warnings that they are not doctors, and to get medical opinions, see experts before you try traction etc, but they seem to me highly irresponsible.
 
Trish said:
They include guides on how to read scans, offers to read each others' scans, and how to self diagnose with various spinal disorders, how to do traction, and a protocol of some sort. Yes, they add warnings that they are not doctors, and to get medical opinions, see experts before you try traction etc, but they seem to me highly irresponsible.
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Only just digested this part of your post Trish. Good grief!!!

Surely there must be precedents in law where disclaimers are way too inadequate for the provocative material they supposedly disclaim.
 
Barry said:
Only just digested this part of your post Trish. Good grief!!!

Surely there must be precedents in law where disclaimers are way too inadequate for the provocative material they supposedly disclaim.
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A cross border legal mess of practically unaddressable impossibilities for most people in terms of restitution/recourse, I would assume. I'm out of date, but would assume that the law in most jurisdictions has not caught up with social media realities, even where all people are in one jurisdiction - conversation between people/patients is not unlawful. Defining what goes too far beyond that idea is probably tricky, especially if no static or event marketing are involved that clearly contravene regulations.

On another note:

Are/should ME organisations being asked for positions also, from Solve, MEA to Physios for ME?

(Edited)
 
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Some org rep's have liked posts of surgery result images on Twitter, but many readers do not realise that Twitter likes do not equal endorsements and are often used merely to flag newsflow.

At worst, it appears like an endorsement, at best, it confuses, at least before positions are explicitly taken.
 
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Jen Brea herself knows that the research isn’t there, but is still ok with it:



I think this is the worst thing.

But in any case, it’s not a legitimate excuse. Covid happened in 2020. But surgeons haven’t even provided controlled studies into traction - and for using the measurements they use - for CCI itself, and outcomes. They’ve had decades to do this. Weird how she doesn’t mention that.
 
We researchers at our clinicfully agree on the core purpose and values of this organisation: to provide a platform to discuss all aspects of this disease, with a special focus on science, support, and advocacy. We value four things especially
  • high quality scientific research, which will be necessary to produce effective treatments;
  • open, critical discussion of claims and ideas;
  • mutual support and respect;
  • equality
No one should claim mechanisms based on pseudoscience or no science at all. On the other hand one should be careful not to deny facts and figures and respect peer review articles and meet arguments in right arena. We do not advocate hypes or wrongful surgery, but one should not exclude a patient group within the cohort of ME/CFS adequate surgical procedures if there are indications. And we have found that there might be an overrepresentation of both craniocervical obstructions and joint hypermobility as well as possible trait of intracranial hypertension, published today in Frontiers of Neurology. It can be downloaded or read onsite. We DO NOT argue for surgery, there are many other options if our findings are confirmed, and really we are starting new studies based on that. And I absolutely agree on the need for warnings on wrongful or not indicated surgery, I am a pain specialist after all, and within a surgical speciality and have seen severe side effects or outcome of such surgery through the years.

But it would be contraindicated to deny further peer-reviewed research on the topic, and even more important that those performing surgery publish their results. That is a demand that this forum can advocate for. Please publish results on surgery in ME patients. We are trying to identify and interview such patients in Sweden.
 
Just a recent example of what I said about journalists in Germany taking the 'stuctural spinal cause of ME' as facts:

https://www.berliner-zeitung.de/ges...ein-kind-wenn-ich-nicht-mehr-da-bin-li.102327

google translate of the article: https://translate.google.com/translate?sl=auto&tl=en&u=https://www.berliner-zeitung.de/gesundheit-oekologie/fatigue-cfsme-chronisches-erschoepfungssyndrom-berlin-spandau-wer-pflegt-mein-kind-wenn-ich-nicht-mehr-da-bin-li.102327

the last paragraph:
Despite all the tragedy, there is still a glimmer of hope, says Marie. It leads to Barcelona around 1900 kilometers away. There is a medical expert there, the neurosurgeon Vicenc Gilete.

He performs operations on people with CFS / ME, which is unique in Europe. During the intervention on the cervical spine, the narrowed nerve canals, which is also a side effect of the serious illness, are to be relieved.
[...]
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I think Prof Scheibenbogen, the LVS (a German ME charity) and the two outpatient clinics that are quoted/ linked in other parts of the article should distance themselves from this paragraph. @Joh

Edited to add: The Berliner Zeitung is one of the major Belrin based daily newspapers.
 
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Jonathan Edwards said:
I think the spreading and endorsing of pseudoscience has gone far enough.

I would like to make a personal request here to the following people to publicly declare that they agree that disseminating claims linking ME/CFS to spinal problems requiring surgery is unwarranted and irresponsible.

I hope that one way or another this will come to their attention:

Dr Ron Davis
Dr Nancy Klimas
Dr Jonas Bergquist
Dr Lucinda Bateman
Dr James Baraniuk
Dr Luis Nacul
Dr Anthony Komaroff
Dr Suzanne Vernon
Dr Oysten Fluge
Dr Olav Mella
Dr Mady Hornig
Dr Ian Lipkin
Dr Avi Nath
Dr Björn Bragee
Dr Bo Bertilson
Dr Carmen Scheibenbogen
Dr Don Staines
Dr Sonia Marshall-Gradisnik
Dr Charles Shepherd
Dr Nigel Speight
Dr Maureen Hansen
Dr Derya Unutmaz
Dr Dan Peterson
Dr Elisa Oltra
Dr Emma Rheinhold
Dr Alan Hakim
Dr Stephen Holgate
Dr Neil Harrison
Dr Carmine Pariente
Dr Julia Newton

It is something that responsible physicians and scientists need to say.
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I just stumbled across this, posted in 2020, while searching for something else. It seemed a very good initiative. Just wondering what the upshot was?

I've lost track of what's happening with this surgery in relation to PwME.
 
Sasha said:
I just stumbled across this, posted in 2020, while searching for something else. It seemed a very good initiative. Just wondering what the upshot was?
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As far as I can work out not a single clinician was prepared to stand up for maintaining safe standards of care for people with ME/CFS. One or two made noises, but noises that could be interpreted pretty much however is convenient. It doesn't surprise me that much. But it seems pretty pervasive. At least amongst clinicians only indirectly involved with ME/CFS there have been one or two writing concerned letters to professional bodies.
 
The link from the AfME site is also a dead end:

I did find this in the minutes from a ForwardME meeting from this post:
11. STATEMENT ON SPINAL SURGERY FOR PATIENTS WITH ME

Russell Fleming was concerned that members of the public reading the proposed statement might not know what the surgery was about. Was it a big enough issue for everyone or did it simply concern a small number of people active on the internet?

Charles Shepherd said that there was a lot more interest in the USA where it had received more publicity.

Professor Jonathan Edwards had approached several ME charities with his concerns. Small numbers of people in the UK were spending huge amounts of money to go overseas to have potentially unsuitable surgery. He felt it right that a group of charities, such as Forward-ME, should express their position on this. He suggested that we go back to Professor Edwards when we had decided on the wording of the statement as it was possible that some clinicians would also agree to sign.

Sue Waddle said, in response to Russell’s concerns, that there was a difference between fuelling flames and having a position statement. She had neck surgery in the past and had problems. It was a huge, life-changing operation.

Willy Weir described current evidence as anecdotal. He described conditions relating to the spinal cord and brain blood flow found in ME but cautioned against inappropriate surgery. He said that it was an area that needed to be thoroughly investigated rather than debunked. Margaret pointed out that the statement clearly indicated the need for scientific evidence.

Laurie Jones said that #MEActionUK also wanted to issue a statement but did not want to stifle exploration. People were getting surgery for co-morbid conditions. Doctors were not operating for ME symptoms. There was patient perception that surgery was for ME. It was people with co-morbid spinal conditions who were getting surgery. Margaret asked Laurie to make the necessary amendments to the statement.

Sam Bromiley said that AfME agreed with the statement in principle, but they would need two weeks to get their Trustees’ feedback. He thought that this might give rise to questions about other ‘fringe’ treatments and wondered whether we need to take a position, or would this case be exceptional. He suggested that we should make a joint statement on CBT/GET.

Nigel Speight cautioned against being too negative. He had noticed the link between hypermobility and ME and others developed ME following neck injury.

Suzie Henson-Amphlett said that Tymes Trust would be happy to support the statement.

Tony Crouch thought that the first sentence should be toned down. This was agreed.

Margaret said she would take any amendments and send the revised statement to the Group so that members could obtain Trustee approval where necessary. Agreement should be obtained by 30 September 2020.
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