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

[Jonathan Edwards]

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 wondering about this for a while and am now trying to get some hard information.

I have been asking around the UK research community. I do not have any specific information so far but the implication of the one specific comment I have had is that none of a large cohort of PWME have an EDS diagnosis. So I will try and get some facts.

 

[Hoopoe]

 

[ladycatlover]

I have been asking around the UK research community. I do not have any specific information so far but the implication of the one specific comment I have had is that none of a large cohort of PWME have an EDS diagnosis. So I will try and get some facts.

@Johnathan Edwards, as a preliminary trawl for facts might you consider setting up a survey here? It wouldn't be enormously scientific, but might give an idea as to how many have one of the genetic forms of EDS and how many "merely" have hypermobility. I'm sure the Mods could help set it up if you don't have time - just pass on the questions.

(the reason for the quotation marks around "merely" is that I have hypermobility, but there's no "merely" about it in terms of frequent ankle sprains and several extremely painful knee dislocations mainly in my teens - I became a bit more canny about being careful how I walked and ran as I got older!)

 

[Jonathan Edwards]

as a preliminary trawl for facts might you consider setting up a survey here

I think that gets us in to our old friend expectation bias. I have a rough idea how many people on the forums have hypermobility and how many have other connective tissue problems but I think we want data from sources that will minimise bias. The most obvious thing is to look at cohorts that have been gathered for other reasons.

 

[Mij]

I decided to watch Unrest yesterday for the first time to get a better perspective on Jen's history. I think we might discover that there are ME type I and ME type II. I could not relate to Jen's experience at all.

 

[Guest 2176]

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 ?

Davis doesn’t “know” there’s no virus. He knows that there’s no more viral dna in the blood of his cohort of patients than in controls. There are many ways that’s viruses can cause trouble without actively replicating and dumping dna. Anyway, there are probably environmental factors that can contribute to acquired connective tissue disorders. Also I’m not sure there’s an EDS Gene that can be tested for using the standard consumer grade tests , I always thought those we’re basically useless and the genes behind hEDS haven’t been discovered

 

[Sid]

I could not relate to Jen's experience at all.

Me neither. I am very grateful to Jen for her advocacy. I think it's been effective. I just couldn't relate to her presentation at all and as a result did not show the movie to anyone in my non-ME family/social circle. There were also medical claims in the movie about NK cells, mold, autoimmunity/rituximab etc. which have no scientific basis so I can't show the movie to any of the doctors I know.

Davis doesn’t “know” there’s no virus.

Lipkin has also looked for a virus and hasn't found it. As have many others over the years. While I cannot "know" that there isn't a diamond buried in my back yard, I can't exactly waste the rest of my life digging on the off-chance that there is.

 

[Hoopoe]

I could relate to her when she crashed hard after going out, although I don't crash in the same way as she did in that scene. Then again I'm not as ill as she was at the time and it's difficult to predict how things would be if I was.

 

[arewenearlythereyet]

I decided to watch Unrest yesterday for the first time to get a better perspective on Jen's history. I think we might discover that there are ME type I and ME type II. I could not relate to Jen's experience at all.

Me too, I have never experienced the paralysis/passing out as a result of my ME.

However my sister in law who coincidently also has ME does have this symptom. She is mild/moderate and gradual onset like me so I don’t think this is necessarily a factor of onset type as others I think have suggested elsewhere. So it could be just a different presentation of symptoms or it could be something else altogether I suppose. It’s so difficult to tell.

 

[Mij]

@arewenearlythereyet I had a sudden viral/vertigo onset.

 

[Inara]

My experience, which includes being a patient of Dr. Kaufman previously, as well as Dr. Kogelnik, includes times that I have been prescribed treatments without adequate warning/information/disclosure of risk/benefit.

I make this experience with every doctor. I always have to make a risk-benefit assessment myself.

 

[Perrier]

When I watched Unrest, I must say, it was the first time that I saw depicted so many of the symptoms I watch on a daily basis, here at home. I was stunned to watch on film what I see non stop. There were some moments that were quite different. However, the crawling up the stairs, the sudden collapsing, the crashes, the pallor, the 'seizures,' and other things are very familiar.

I was thrilled with the film because I thought finally physicians and researchers will see what life is like with this horror.

I am most interested in the posts above, where folks state that they could not see themselves in the film Unrest. I can't help but wonder, what the nature and manifestation of their ME is. I would be grateful to hear details.

I will just add, that I found the discussion we had to be robust but it was really interesting. And I regret that Jen and Jeff have left. There were many small details they highlighted that made for interesting information. The rebuttals to them, and the questions were also first rate. What a pity to lose this....

 

[arewenearlythereyet]

@arewenearlythereyet I had a sudden viral/vertigo onset.

Yes I can’t for the life of me remember where I heard the connection between sudden viral onset and this sort of presentation ? It does seem to be more complicated than viral or not viral though from what we can see of all the varying accounts.

 

[Mij]

I am most interested in the posts above, where folks state that they could not see themselves in the film Unrest. I can't help but wonder, what the nature and manifestation of their ME is. I would be grateful to hear details.

The viral infection resolved itself in my case. I started improving at the 5.5 year mark and returned to work only to relapse 3 weeks later. I don't have any of the comorbidities that others speak of except for autonomic issues where I need to lie down frequently. I have PEM but can prevent it if I pace myself properly.

 

[arewenearlythereyet]

I am most interested in the posts above, where folks state that they could not see themselves in the film Unrest. I can't help but wonder, what the nature and manifestation of their ME is. I would be grateful to hear details.

In my case I initially presented with numb hands and feet and over the period of around 6 months deteriorated with joint pain in legs, muscle fatigue/weakness and cognitive symptoms. Eventually being signed off work for 5 months and then returning to full time work with restrictions.
I had the wet bed sweats a couple of bouts of noravirus and a bout of staph a skin infections etc over the first year but no clear sudden onset.....it was very gradual. Now with pacing I crash every 3 weeks or so, no sweats but a lot more cognitive problems...I’m deteriorating slowly (5000 steps in 2014 to 2500 now) . Pacing makes PEM a lot milder and shorter (if I’m good or don’t have a cold etc). I’ve never got rid of PEM, but I have decided to carry on working.

 

[anniekim]

Davis doesn’t “know” there’s no virus.

Caveat - I have zero scientific knowledge. Don’t some argue some viruses such as enteroviruses can only be found in blood in initial stages of infection then they retreat often into tissue, with particularly affinity to brain tissue, so unless have looked at tissue too can’t count virus out?

 

[Hoopoe]

A friend's friend has multiple sclerosis and is bed bound and slowly dying from it. There are also people that have multiple sclerosis and don't look sick and can function fairly well in daily life. Same illness, looks totally different from the outside. I understand that MS can also produce a wide variety of symptoms and is heterogenous.

 

[Hoopoe]

A useful I think way to think about ME/CFS in the context of subgroups is that we cannot reject the idea that it's mostly a single disease (after allowing for some inevitable misdiagnoses). We also cannot reject the idea that it's many different diseases.

It is useful to draw a boundary somewhere between all unexplained illness and what we think is ME/CFS. That boundary has been set at PEM.

At the NIH conference, Keller said something along the lines of "the heterogeneity of patients drastically decreases when we test them on a 2-day CPET". So there is hope that this may not be as difficult a problem to solve.

 

[anniekim]

@strategist, Jonathan has responded to this elsewhere on s4me, see screenshot above.

 

[Hutan]

We would not normally discuss moderation decisions, but here is some general information.

Apologies, I don't want to disrupt the conversation, but I forgot to respond to the statement in Jen's post about members being put on moderation.

I am disturbed by the number of people who have been quietly put on moderation or had their posts modified or deleted.

That statement of Jen's gives an incorrect impression; no one at all had been put on moderation as a result of discussions about CCI or on the CCI threads.

Moderators don't ever put anyone on moderation or modify a post or delete a post 'quietly'. If we ever feel we have to do any of those things, the member is notified and we explain why we are taking that action. As stated in the rules, there is a process members can follow to appeal any decision.