Article: CAA Talks With the Experts on XMRV

You can view the page at http://www.forums.aboutmecfs.org/content.php?219-CAA-Talks-With-the-Experts-on-XMRV

 

Hello all-
I see a lot of this discussion has evolved into answering my reference to the grammar as being "simple." First of all, I did not mean to offend anyone! But I'm glad I precipitated this discussion because not only do I now understand some other PWCs experiences better, but ironically I had the same experience only I completely forgot about it until I read Alex's response to my post!

I used to be a computer programmer. In 1991 suddenly I couldn't think - nothing was logical anymore. I would look at the specifications and the lines of code I was supposed to modify and I had no idea what to do! It simply didn't make sense anymore! This passed however (though it did lead to my being forced to stop working). Since at the time I had no idea that CFS existed and psychiatrists had convinced me my health problems were psychiatric (not too bright of me, huh?), I never emphasized this symptom when discussing it with CFS specialists later. My manifestations are so overwhelmingly physical that the cognitive stuff is dwarfed by comparison, especially the historical symptoms that are no longer bothering me.

I also went through a period of years in the early 90s when I often became disoriented as to where I was especially when it was dark. I was able to cope with that by never driving anywhere at night that wasn't totally familiar. I have my neurological issues still; insomnia, early awakening, difficulty concentrating, forgetting a thought I had literally one second later, hand tremoring, POTS, bouts of depression, and light, noise and odor/chemical sensitivity. I also can't remember people that I've met only once before, There is something amiss with my facial recognition abilities. Thinking a lot and trying to learn new things is overwhelming, but I still feel capable, just easily worn out by it. In that sense it may be inextricably intertwined with my profound lack of energy. I cannot tell because when I feel better, I feel like a different person and my brain processes faster as well.

I am totally bedridden now and must lie flat all the time, so I have my laptop in bed, lie on my side and type with my right hand only. I've never considered myself much of a writer, but do find that like Sing, I am enjoying the process of trying to find the right words to express and clarify my symptoms and experiences and hopefully contribute something to the discussions here rather than just feeding off everyone else's efforts and knowledge. My energy to contribute however is extremely limited so I post only occassionally because it requires so much effort to make my post clear. I have learned a great deal about my illness from all of you generously posting your experiences. I thank you for that.

Again, if I have offended anyone, I apologize. :Retro redface: It was not my intent. I was just trying to help.

 

Actually, not so tough! Affect is a verb, for example "Perception affects the direction of research." Effect is a noun, i.e. "Hopefully antiretrovirals will have only mild side effects on me!" Unless of course you are referring to the psych term affect, which is pronounced differently and treated as a noun, i.e. "His affect was depressed, so his doctor said he has CFS!"

Its and it's are fairly simple as well. Use "it's" only when you are shortening "it is". Otherwise, use "its". I think it's confusing for people because an apostrophe sometimes indicates possession, however in this case "its" without the apostrophe actually indicates possession. Sing in post #17 of this thread used it correctly "What is useful to this end is to criticize the opponent's work, while the CDC gets time to step by step move away from its old position." Cort, you are not alone on this forum to mix these things up. I see most posters do it most of the time. I also think you're in a rush to get these wonderful analyses out to us in a timely fashion and mistakes are inevitable, and I for one am very appreciative of your efforts! :Retro smile:

Enough with the grammar lesson - I have a question about numbers!

If the problem with finding XMRV/MuLVs in the CDC's sample is even partially from a far too inclusive definition of CFS, what are the implications for the number of CFS cases I always hear bandied about as being from 1-4 million in the US and 17 million worldwide? I've had this for 33 years and never knew anyone else who had it, nor did I know anyone who knew anyone who had it until 2003. In 2003 I met a friend whose step daughter got it when she was in college. My neighbor's sister was diagnosed with fibromyalgia this year, but that's it. I have gotten together with others who are ill, but I'm not counting them because we met through the internet due to our mutual illness. So where are all these folks? I know we're homebound/bedridden and invisible, but the numbers seem impossibly high to me or someone I know would know 1 or 2 people over the years who have it.

Thanks - I was hoping those questions would get answered . Where is everybody???? - has always been one of my big questions...How does the biggest Forum on CFS only have 3,000 members (and climbing, of course ) but still if 200,000 people have been diagnosed - where is everybody?

 

Very glad you raised this Alex, and I like your phrase: neurological grammar degradation

I would love to know if this is temporary of permanent. (No research has been done on this area of neurology in ME. Nobody ever asks us patients anyway, and no one cars or can get funding to find out how/what is wrong).

I increasingly struggle to spell now and have no idea on lots of words, I have effectively 'forgotten'.
I just guess or ask other people how to spell in every single message I type which is very time consuming. Is this caused by brain cell loss/brain atrophy, or 'just' cellular exhaustion in the brain...who knows? What is worrying is spelling is accessing long term memory. The abilty to use grammar shouldn't just vanish, but it does.

Of the limited people I've met with ME, some are prone to stammer/slur their spontaneous speech the more exhausted they get from talking or when put 'on the spot', not all of course. The worst talk with a whisper or even sound slightly drunk after a chat. I do too, if very out of it. Mostly I just don't speak. Good job I have no friends to phone me.

It would be interesting to compare physical mobilty (walking) with speech mobility (communicating) in ME patients. E.g get people with severe ME and test them on speech challenges, Vs people with mild CFS who can walk and work. Is there a difference? There should be.

It would make sense an exhausted body (on a cellular level caused by impaired mitochondrial function) would radically affect brain function/memory and thus speech/handwriting/spelling as well as make muscles profoundly weak.

The only thing I've read and taken part in was an IQ test, which was a lot lower than when I fell ill. (Neuropsychometry). Without at all meaning to be rude to other people, I'm sure we've all had moments when we are amazed how apparently 'stupid' we are in cognitive tasks, compared to when healthy. (I've struggled with these things since a child, long before the muscle weakness and neuro immune symptoms came on).

I bet if you put someone with severe ME in am unfamiliar environment, say.. a new shopping centre or large college (first magically take away any anxiety/panic disorder), they'd most likely struggle to work out how to get outside, find a bus/taxi, travel back home. E.g. navigate their way out without help.

This 'obvious' disabilty of the brain is masked by ME people getting help from others, or simply being so ill they never leave their homes and no one knows how bad ME affects them. I told one of my relatives once and they promptly told me my ''alleged' cognitive dysfunction was not there. Rather strange I thought to say ''alleged'' after I explained everything to them?!

If family friends do this, no wonder ME patients are reluctant to tell anyone how mashed their brains feel once out of a familiar environment they have learnt. Spelling and sentence structure loss is sadly, on the last of most people's lists to enquire about at the doctor's office, but shouldn't be as it's very intrusive.

The last time I was in a shop on my own (16 yrs ago)and ill for a few years but still just about mobile from car to shop, I remember being totally overwhelmed at the concept of having to search for food that had lots of packets that looked the same, but were slightly different (e.g chilled section of cheese/meat).

The idea people can think 'on the fly' and do this automatically and go food shopping nowadays seems baffling to me, the 'speed' at what healthy people can think. I'm praying this is simply an exhausted brain/body, yet people can go shopping after 5hrs in a nightclub quite happily and don't have to ask for help like an 'old granny'. It's strange and somewhat disturbing experiencing this when you're a teen, or in your twenties. Like a mini Alzheimer's state.

For people with 'brain fog' who can still stand upright with ME/CFS try a soft drinks machine, parking ticket machine, or a ATM and see how you get on. Those things used to stump me too, and remembering where I'd parked the car.

Such an important topic...I would love to be able to include IQ or neuropsych tests on the Patient Data Repository/Treatment Review program we're creating....It would be great to do baseline tests and then test again after people do different treatments to see which ones are impacting cognitive functioning best. For me, too much exercise results in a dramatic, dramatic decline in cognitive functioning.

 

Yep, serious derailment of the topic.....I'll do better (after this post)

Dreambirdie....thanks, yes I'm quite thrilled about this much progress. Amazing what a trip through hell and back can do to make one grateful for the small things. And actually, it's not small at all considering I am amazed to even have lived through the abyss.

Sing....thanks. Midodrine had a very profound effect on me. I had really bad OI back then (couldn't stay upright over like 1-2 minutes) and it straightened that right out (very diagnostic). For me it was a great drug, but like many other meds, I couldn't continue with it. I sure hope you can.

 

Sometimes I almost feel as though the parts of my brain that process emotion are more screwed up than the parts that process things intellectually. I guess you could even hypothesize that means my left brain is more impacted than my right brain. This could be just the luck of the draw as to which parts of the brain are affected more severely.

Right Brain/Left Brain in CFS- another fascinating question...I think I am similar to you but verbally I got hit pretty hard. I think writing is easier because its simpler - less stimuli....

 

Hi illsince1977

I can't speak for others but I was not personally offended in any way. I understood where you were coming from, and put forward an additional way to think about things.

We have more in common than most: I was trained as a computer programmer, with specialty training in AI, and was studying for my PhD when my CFS went from moderate to severe and I was forced out of my PhD. I can remember spending hours staring at the computer screen, trying to figure out the most basic issues with my code or experimental design or basic mathematics, and I couldn't. Some days I couldn't even figure out how to log on to my unix account. Indeed, I used to turn around and play computer games on the desktop behind me: it was the only time I had any sense of control, because I could always trash the computer. This marked the beginning of my love affair with computer games (but not high stress shooters, I can't handle adrenaline).

I too have forgotten much of what happened to me. This is an upside to our memory problems. Every now and then I read someone's post and think "damn, that happened to me too" only I had forgotten it.

Indeed, while at uni I had one (and only one) day with severe amnesia. I could only dimly remember my name - it took me about ten seconds when i thought to try. I knew I was at a uni but didn't understand why - this happened when I was halfway from my computer lab to the library, so I was standing in a passageway. I decided to go home and sleep, I felt very tired, but I couldn't remember where I lived. So I checked my wallet and found half a dozen addresses - none I recognized. My key didn't help me (no markings), I could still reason, I just didn't remember the important stuff. So I looked at all the addresses again, thought about them, and caught a bus to the closest to where I was: even though I couldn't recall living there. I knew where it was, which was very strange, indeed I could have found my way to any of my old addresses, I just didn't recall anything about living there. So I got to my old address, the key fit, I crashed and woke up the next day with my memory restored, no more drama. My doctor thought I might have had a cytokine surge, this could cause such problems (similar to patients on high dose interferon therapy). So memory problems we all understand; I do know I have forgotten a lot myself, just dont ask me to list what it is I have forgotten. ;-)

Bye
Alex

Hello all-
I see a lot of this discussion has evolved into answering my reference to the grammar as being "simple." First of all, I did not mean to offend anyone! But I'm glad I precipitated this discussion because not only do I now understand some other PWCs experiences better, but ironically I had the same experience only I completely forgot about it until I read Alex's response to my post! I used to be a computer programmer. In 1991 suddenly I couldn't think - nothing was logical anymore. I would look at the specifications and the lines of code I was supposed to modify and I had no idea what to do! It simply didn't make sense anymore! This passed however (though it did lead to my being forced to stop working).

 

Luckily I never lost my dreams... though I do notice my dreams get rather creepy and dark when I am going through a setback, with the common themes being that I am in a "bad neighborhood," or that some sinister character is lurking around or chasing me or breaking into my house, or that my house is infested with some strange bugs, or that I am walking home exhausted and feel like I will never make it back. Whenever I feel better, my dreams change and become friendlier and happier... reflecting my brain's recovery from setback and exhaustion.

Wow, this really spoke to me. I have strange dreams/nightmares at times ... a recurring theme is that I am lost somewhere (like a big ominous airport/shopping mall/other big complicated place) and trying to find my way back to a room or other safe place, or find something that I desperately need to find, and I have that horrible "clock running down" feeling that I won't have enough energy to reach my goal, that I'll collapse and not be able to move.

 

Hi Cort,

There must be online tests we could use to do this for those who wish to participate. I for one would be interested to see how my functional IQ varies.

I confess I haven't been worried about going off topic because this thread is a pointer to the great Q&A, and that speaks for itself elsewhere.

Bye
Alex

Such an important topic...I would love to be able to include IQ or neuropsych tests on the Patient Data Repository/Treatment Review program we're creating....It would be great to do baseline tests and then test again after people do different treatments to see which ones are impacting cognitive functioning best. For me, too much exercise results in a dramatic, dramatic decline in cognitive functioning.

 

Thanks - I was hoping those questions would get answered . Where is everybody???? - has always been one of my big questions...How does the biggest Forum on CFS only have 3,000 members (and climbing, of course ) but still if 200,000 people have been diagnosed - where is everybody?

That's what I want to know. Where is everybody??? My rudimentary understanding of statistics and population studies from my B.A. in sociology combined with my long personal history with this disease keeps screaming at me those numbers ARE WRONG! Cort, I'm with you as I was astounded to learn recently that this forum has so few members. I cannot reconcile this with 1-4 million sufferers in the US. Lack of recognition of this disease by those we meet casually must be due to its rarity, not just a publicity problem.

BTW, when I was listing my neuro symptoms, I forgot headaches - headaches, headaches and more headaches! Now how on earth could I forget that? Got me!

 

Thanks - I was hoping those questions would get answered . Where is everybody???? - has always been one of my big questions...How does the biggest Forum on CFS only have 3,000 members (and climbing, of course ) but still if 200,000 people have been diagnosed - where is everybody?

Some ideas --
I read the website on and off for several years before I started reading the forums and read the forums for 6 mo or so before I joined. There could be a lot of people who for a variety of reasons read but don't join.

There are quite possibly a fair number of sufferers who can't tolerate computerbo screens, or who can tolerate them for such limited amounts of time that joining a forum isn't high enough on their priority lists.

There may be people at both ends of the ME/CFS spectrum that can't, or don't feel they need to join a specialist forum.

And, of course, when there's too much nastiness, I imagine plenty of potential members skive off...

I expect membership will climb as the HGRV research increases -- more people will be wanting to keep up on the latest.

 

On the brain fog/difficulty comprehending topic, I have a request to make. Could you-all try to break up your posts up into reasonably small paragraphs?

It's really difficult for me to keep track of what line I'm on when it's all together with no spacing, and I end up having to skip most of the post. Don't want to do that, because this stuff is really interesting!

 

Does anyone know why the CAA makes no mention of the upcoming conference on their website besides this FAQ and a tiny paragraph in their archives section http://www.cfids.org/archives/2006-2010-cfidslink/september-2010.asp

Are they trying to downplay the hype?? Shouldn't this conference be the headline? Why is a story about postexertional malaise their headline in a time like this?

 

Does anyone know why the CAA makes no mention of the upcoming conference on their website besides this FAQ and a tiny paragraph in their archives section http://www.cfids.org/archives/2006-2010-cfidslink/september-2010.asp

Are they trying to downplay the hype?? Shouldn't this conference be the headline? Why is a story about postexertional malaise their headline in a time like this?

That's a really good point.

 

That's what I want to know. Where is everybody???

I can only go by the people I know who have ME. Two people who have been diagnosed with it that I know personally (both of them old friends from university), 3 who I believe have CFS but not by CCC. I've contacted them all, and everybody else I know, and thus found another 2 people who have a friend/relative with ME.

Not one of them had heard anything about the news of XMRV, all of them were interested, but all of them were basically disillusioned. I'd say all of them have a basic attitude of "wait and see" and feel they haven't got the energy to participate online, they've found everything they've seen online confusing and stuffed full of weird suspicious science they can't make sense of, they didn't know who to trust and basically aren't online. So if that sample's anything to go by, I'd say it's very unusual for people with ME/CFS to join up for forums.

Having said all that, there are several other forums out there that I've heard about, and all of them that I know of are private or semi-private. I guess people have had such bad experiences in the past with people coming on to forums to bully them, and such bad disputes, that they've had to go underground. Don't know, but that's the way it seems. I certainly wouldn't conclude anything from all that about the prevalence of ME. I think we're just underground, scared, hidden away, disillusioned, information-starved, and cynical and despairing after so many false dawns.

 

On the brain fog/difficulty comprehending topic, I have a request to make. Could you-all try to break up your posts up into reasonably small paragraphs?

It's really difficult for me to keep track of what line I'm on when it's all together with no spacing, and I end up having to skip most of the post. Don't want to do that, because this stuff is really interesting!

I second LaurelW's request. :Retro smile: Sometimes I miss out on interesting posts because I can't manage the long paragraphs.

 

I second LaurelW's request. :Retro smile: Sometimes I miss out on interesting posts because I can't manage the long paragraphs.

I third it.

 

I had both intellectual and emotional suppression. I hear lots about pwc's being emotionally labile, but not me. I didn't feel anything for several years (which in some ways may have been a blessing). I didn't dream or feel anything. It was like being in a void (an abyss). Intellectually, I was a dark mess too having most trouble with word finding, focus, and spatial relationships. Things like not remembering my daughters name, and not knowing why I was in town and when I had actually arrived there. And for sure on the vocabulary issue too. I seem to elaborate too much attempting to make up for the holes. Definitely had a problem with intellectual articulation.

Anyhow, since Tx, I have began to dream and feel again. It's really cool to actually dream now....I look forward to it. I feel feelings that I haven't felt in years.....I appreciate that too. I was like a zombie with no feeling or dreams. I feel alive now. The intellectual part is still in bit of a fog, but much better (at least I think it is). I know more of that will return with Tx, but I'm not convinced I'll get it all back....Oh well, lots of things I won't get back after 17 years wrestling a dragon.

**What treatment? You found something that actually works?? Please advise.

 

Does anyone know why the CAA makes no mention of the upcoming conference on their website besides this FAQ and a tiny paragraph in their archives section http://www.cfids.org/archives/2006-2010-cfidslink/september-2010.asp

Are they trying to downplay the hype?? Shouldn't this conference be the headline? Why is a story about postexertional malaise their headline in a time like this?

I don't really want to engage in the ongoing argument about the flaws of the CAA, but I do have to disagree with you on this.

They sent out a special edition of their email newsletter the day of the PNAS study that mentioned the conference, and mentioned it again in their September newsletter that went out last week. So in the course of 8 days, they informed me of the conference twice. They have also posted the information on Facebook over the past week.

The "tiny paragraph" you refer to is reached by clicking on the first link on their home page under "What's New?", which leads you to that September newsletter.

Also on the home page under "Research and Policy", if you click on the first link, you will find the conference mentioned. This is a resource page for the study that includes links to the study and accompanying articles, links to coverage in the media, and links to the CAA's articles on the study.

The item on postexertional malaise doesn't strike me as the headline, and I really don't see them downplaying the conference. Kim McCleary and Suzanne Vernon are attending the conference, and I'm sure we'll hear more from them this week.

 

On the brain fog/difficulty comprehending topic, I have a request to make. Could you-all try to break up your posts up into reasonably small paragraphs?

It's really difficult for me to keep track of what line I'm on when it's all together with no spacing, and I end up having to skip most of the post. Don't want to do that, because this stuff is really interesting!

I edited the my post #41 into shorter paragraphs. Sorry about that. I find long paragraphs difficult to keep track of as well. Hopefully it's more legible now.

As far as the "Where is everybody" question?" thanks for your answer Mark. That's more what I meant - How many people does everyone know who has CFS. I can understand why folks shy away from fora. The thing I like about PR is it's not as single minded as most others I have participated in. Though the ProHealth forum probably looks at many aspects of this illness, I got the (perhaps mistaken) impression years ago that they were extremely guaifenesin/St. Armand slanted, which lost its appeal for me once I crashed after 18 good months on the protocol.

Of course now I'm getting pretty singleminded as far as believing in a retroviral cause for myself, anyway. I've tried so many things over the years that if it's not this type of heretofore unknown pathogen I am in for untold legions of disappointment and depression!:worried:

At least I'll know that because of you I will not be alone!:Retro smile:

 

I second that request...

On the brain fog/difficulty comprehending topic, I have a request to make. Could you-all try to break up your posts up into reasonably small paragraphs?

It's really difficult for me to keep track of what line I'm on when it's all together with no spacing, and I end up having to skip most of the post. Don't want to do that, because this stuff is really interesting!

Interesting. I, too, am fortunate that I still have much of my mind, though I'm certain it's not up to it's previous way high functioning. It sounds conceited, and I don't mean it that way, but I started out with a lot of smarts, so having lost even a good amount still leaves me with more than average. However, there are certain problems that stand out. Keeping track of where I am on a page is one, and I've given up on a lot of posts here that I wanted to read, because they were solid blocks of text in which I couldn't keep my eyes on track while reading.

I also have trouble sorting things and doing mental arithmetic. I practice the latter a lot, so it's OK now, except when I'm extra tired. If I knock myself into severe PEM I get aphasia for nouns and names, too. Mainly I can't multitask like I used to and sensory sensitivity interferes with cognition. I know it's off topic, so I'll quit now. Again, though, thank you for asking for breaking posts up into smaller more easily digestible chunks.