The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Kaufman and Davis think they do. Hyde thinks EDS increases ME severity. I never knew anyone with EDS pre-ME days and now I know personally dozens and have encountered hundreds who have it.

OK, take care everyone!

 

And I have come to know many pwME over years and only one has EDS. I know a link has been established more recently but I would still not say many! It seems hyperbolic.

 

I have been working in university research projects for several years and my experience is the following. During official meetings with an agenda, creativity is often implicitly suppressed and there is little real exchange of ideas or commenting on each other's ideas. However, the few times a year when a leisure or recreation day was held somewhere in a completely relaxed setting was often where the completely new ideas came up, which were sometimes very useful, sometimes not, but they provided a new angle or hypothesis that wasn't obtained in the official meetings or one-to-one meetings.

The most concrete example I can think of from my country is the so called "sauna culture". It might be partly a myth, but it's claimed that Nokia when they rose to become a mobile tech giant in the late 90's had a company culture, which included having regular meetings in saunas. As I wasn't participating in of those sauna meetings, I can only speculate now, but I'm pretty sure the meeting was closer to brainstorming session rather than a structured or scientific discussion (I reckon at least after a few beers the sauna meetings became closer to a "brainstorming without structure" rather than a scientific, skeptical discourse).

In my view you need both creative brainstorming type of people and then people who do perhaps less brainstorming, but look at the idea skeptically and work it out into practice. Without one or the other, the end result in my experience has been less fruitful. I think forums like these are good places to have a more open discussion, as it doesn't demand the same level of skepticism as a doctor who is giving advice to his patient.

 

Well this post has seen the light of day. I will let my moderator colleagues decide what, if anything, needs to be done with it. But as I am the only moderator online at the moment and the post is enjoying the light of day, I would like to correct a few inaccuracies. Firstly, nobody has been put on moderation lately, certainly not anybody on this thread, "quietly" or otherwise. What are you talking about?

A few posts have been moderated, but not many. In each instance it has been discussed within the moderation team and with the poster. Of course this has been done quietly out of respect for the poster - how else do you think it should be done? Quite a few posts which contain rule breaches have also been left unmoderated. On the whole the thread has been lightly moderated, with only a handful of posts affected.

It is true that this thread does not contain a true and accurate reflection of everyone's point of view, in fact a number of members who would have liked to post have felt intimidated to do so by the threat of being called aggressive, hostile, dismissive, and a few other words. I find this as disturbing as you do.

@Trish has also set up a thread so that members can air their views about how we want to discuss medical matters. Feel free to contribute to it if you like, preferably without starting false rumours about people being "quietly put on moderation". Absolute nonsense.

 

I don't know how to encourage Jen to return, however, this has been a very stimulating and informative discussion. It was very useful to read the various views on this utterly gripping story. Is there any way to restore things?

 

if kaufman and davis talk and find that 50% pwmecfs may have EDS
... and davis knows there is NO VIRUS, then kaufman knows that too

most ppl here know, they have no EDS genetics (23andme and similar)

so
- no virus
- no genetic EDS

how do the people come about their hEDS ?

is there anything else to conclude than misdiagnosed ?

 

I wanted to ask Jen if she experienced delayed PEM (not immediate PEM) because that is what makes ME distinctive.

 

S4ME is not going to be for everyone. I have huge respect and admiration for @JenB for what she has achieved for pwME, and the guts and tenacity she constantly demonstrates in doing so. But S4ME may not be Jen's thing, and if so then better we just accept that and move on. Is how I see it.

 

What do you mean there’s “no virus”? Is that known? How?

23&me does not test for EDS. Also, the genes for hyper-mobility EDS (hEDS) have not been identified.

I’d like to know what exactly the 50% figure refers to—ie Ron Davis’ estimate or the percentage of Dr. Kaufman’s patients or something else. I do not think it is a percentage based on genetic testing though.

Dr Kaufman is definitely not an expert on EDS, though he is screening his patients for it now apparently, but again I’d like to know how that’s occurring.

At least in the US it is difficult to get genetic testing ordered for EDS even when there is medical necessity. Doctors are very uniformed about EDS. I saw 2 rheumatologists and both looked things up in medical books regarding diagnosis. Now 8 years later I just saw a cardiologist this month who said he’d order genetic testing to find out if I have vascular EDS. My previous cardiologist did not know anything about EDS or POTS. None know anything about ME.

Until now, I viewed ME and EDS and 2 different conditions. Now I don’t know what to think.

I didn’t get diagnosed with EDS until age 42, but unlike JenB I can check so many of the boxes and have had clear symptoms since I was a baby, that I have no doubt I have it. However, I really think that unless I had something else (ME I thought but now who knows? CCI?) I’d be able to do things like physical therapy to improve my condition. It’s definitely not the case that everyone with EDS has ME. That much is clear.

 

@vsou Ron Davis says in the video that he searched hard for a virus, but didn't find one. He explains the methods.

 

IMHO this whole situation exemplifies the problem we have with unspecific criteria, bucket no barrel no builders skip diagnosis and no ability to distinguish subtypes for ME / CFS. Maybe this will act as a stimulus to encourage thought about this.

Clearly EDS is not the same as CFIDS. Also acquired CCI is not (edit : synonymous with) EDS, because EDS is an heritable gene condition by definition. We need to think clearly or we will be lost in the muddle for another half a century.

I would like to observe that another factor in @JenB 's experience has been cancer which is another cause of immune activation which can cause related CFS on its own but may in theory also result from a vulnerability due to CFIDS TH2 shifting. It makes me wonder whether viral onset could mask CFS which was in fact a cancer response. Hers is a complicated history and clinically distinct on the one hand and inspires great sympathy as well.

We are not all the same so in an ideal world we would give each and every one of us care and medical assistance appropriate to our needs.

Nobody is a stereotype.

 

I would advise keeping it on the forum - otherwise, there will probably be more confusion instead of less.

The fact that Jen, one of our most effective advocates, wants to leave the S4ME forum is a sad thing.

Is it possible for the moderators to give some information about this, for example, how many posts in this thread were put on moderation and for which reasons?

Many thanks in advance,

 

I think the fact that Jen also had thyroid cancer may well be significant, my understanding is she was dxd with this before onset of ME, though it was never mentioned in film. She has also spoken of the controversy/lack of evidence of efficacy of surgery for her particular cancer and I think this was why she delayed surgery for so long.

 

Forums are a dynamic process, people come and go, I don't think we need to 'catastrophise' Jen's desire to leave. She is undoubtedly frazzled from answering so many Qs in short time space, not just here but on other platforms, but this has been her absolute choice - to be putting her own story out there in such detail. I am sure when she has had a chance to rest/restore, she will come back.

 

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you took the words right out of my virtual mouth. I’m pleased she is taking the time and effort to respond. I’m sure there will be more coming soon.

 

Stats: This year, an estimated 52,070 adults (14,260 men and 37,810 women) in the United States will be diagnosed with thyroid cancer. Thyroid cancer is the sixth most common cancer in women. It is the most common cancer in women 20 to 34. About 2% of cases occur in children and teens.

 

Thanks for giving this info.

Many thanks to the S4ME moderators who are willing to invest their time and energy into this. It doesn't seem like a fun job to do, but it's important.

 

A muddle is the reality. There may be a human tendency to respond to uncertainty with dogmatism but this is of no help when wanting to find out the truth.

It is easy to define some hypothetical true ME as whatever remains unexplained, or by whatever some authority figure says (but why this person, and not the others that have different opinions?)

Instead of arguing who is right, when we are still mostly at the level of opinion, we should create an inclusive community that can work together to clarify this muddle. There is strength in numbers and ultimately we're all in the same boat, even though it may turn out that we have different illnesses. The solutions that we need are largely the same: serious research and appropriate medical care.

 

Sorry, I had decided to leave this thread alone, but I see a specific request.

All neurosurgeons in major centres can interpret the imaging.
And as Dr Henderson says, the imaging is not diagnostic (although it may be if there is major structural damage as in RA or fracture). CCI is primarily diagnosed on physical signs, which are not features of ME.