XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

[Sean]

I know exactly what you mean Cort... I've only been ill for 6 years, but I find it impossible to remember how I used to feel when I was healthy, especially the normal subtle range of positive feelings and emotions.

After 26 years on this ride, I understand what you are saying.

It actually raises an important issue, how much should you hold onto your past experiences and life as a reference, if your current health situation looks like being seriously adverse and chronic? Do you need to let go of at least a lot of the past to be able to deal with your altered circumstances?

My greatest fear is that even if we get effective treatment, at least some patients will be left with long term organic damage. In particular, cardio-vascular and neurological (mainly cognitive).

Furthermore, even if we suddenly got a treatment that completely cured us physically, we would still have these appalling experiences of suffering and abuse and wasted lives to somehow come to terms with emotionally, and that is no picnic under the best of conditions.

For the non-UK people reading this... Our NHS is often amazing, especially for well-defined and acute conditions with definite treatment outcomes, but for ME patients it is always useless.

It may well be more true for the NHS, but it is also a common feature of medicine generally. They are great at dealing with stuff they already know about and can treat effectively, but not so good with stuff they don't understand and have no effective therapy for.

The fatigue and other problems are livable but I really, really miss my brain.

Same here. I could live with all the other symptoms, if there was no significant cognitive impact, if I still had my basic mental clarity & stamina. Along with disrupted personal relationships, I find the cognitive losses the most difficult, costly, depressing, and humiliating to deal with.

 

[Cort]

I have spend hours looking for a backpack that was ... on my back.

That was good. Thanks.

I am so much better at this now. I used to lose things regularly...valuable things....cheap things....everything. I think I would lose something noticeable about once every week or so. Wallet on the top of the car....Computer on the top of the car (came sliding down the windshield)........burning things frequently - I am so much better now but I do have a fire extinguisher sitting right next to the stove - it was one of the first things I got when I got my apartment... I wonder if that's another sign of someone with CFS they have their fire extinguisher ready.

 

[Cort]

heeheehee...
leaves, that really made me chuckle... :Retro smile:

I have a neat trick of holding my cup of tea in my hand, and taking the tea bag out...
Then, absentmindedly, instead of going to the bin, I go to the sink and chuck my entire cup and it's contents into the sink... and i'm left holding only the tea bag!
I'm not quite sure how i manage to be so totally stupid!
It's quite annoying because I've just made myself the perfect cuppa, and then I have to start all over again and make another cuppa!

TOO GOOD! - Thanks!
​

 

[Bob]

I think "crying in the doctor's office" could be its own whole topic. Even when the doctors are nice I cry. Usually somewhere around the part where I have to say something about how I feel. Hard to avoid that topic in the doctor's office.

I know what you mean, urban... I try not to tell people how I am any more... I just tend to say "yeah, fine" (while thinking "why have you asked me such a stupid question!"), otherwise, when I start explaining about my lack-of-life, I tend to have an emotional reaction.

 

[Bob]

Hi Bob, I am convinced that your natural super-intelligence theory is right; well, as convinced as I am of any hypothesis on these forums. I am repeating myself here, but I think its worth doing. Several times I have had spontaneous remissions of ME or CFS symptoms for some hours; almost all were when I was on immunocal and a bunch of other antioxidants and vitamins.

So, we all have hidden genius on this forum!!! I thought there was something special about this forum!
If only we knew how to have extended periods of remission! There must be an answer, somewhere, if so many of us experience these rare fleeting moments of clarity!

 

[Bob]

Hi urbantravels. maybe its a guy thing but I usually feel very very angry with bad doctors. They are lucky that a. I am so sick and b. I am a believer in reason and c. I am a pseudo-pacifist (actually a pigeon not a dove in game theory, but hey, not a hawk).

Bye
Alex

Have you tried banging the Doctor's door open and shut a few times, when you leave, whilst screaming "I hate you!" at him, like my friend did?...
I haven't tried it yet but I think it would be really satisfying! lol

 

[Bob]

After 26 years on this ride, I understand what you are saying.

It actually raises an important issue, how much should you hold onto your past experiences and life as a reference, if your current health situation looks like being seriously adverse and chronic? Do you need to let go of at least a lot of the past to be able to deal with your altered circumstances?

Interesting question... It's very hard, but I have to try to forget about my previous life, and everyone else's healthy lives, otherwise I get too upset... I don't want to totally forget about my past, but during everyday activities, it's helpful... Sometimes it's nice to take the memory back to the past to remember good experiences.

I've been having quite a lot of dreams where I'm running, running, running... Fast and non-stop... Not running away from anything, like I used to dream, but just running for the sake of it... They are really enjoyable dreams... I used to do loads of running, swimming and cycling, so I miss them... I think that running is a kind of primeaval thing, that my body really misses, so maybe that's why it occurs in my dreams.

My greatest fear is that even if we get effective treatment, at least some patients will be left with long term organic damage. In particular, cardio-vascular and neurological (mainly cognitive).

Furthermore, even if we suddenly got a treatment that completely cured us physically, we would still have these appalling experiences of suffering and abuse and wasted lives to somehow come to terms with emotionally, and that is no picnic under the best of conditions.

I'm optimistic that the human body is very resilient, and our bodies would find a way to bounce back if we eliminated the virus (or whatever the cause is)... I have to hope that we will anyway.

The fatigue and other problems are livable but I really, really miss my brain.

Same here. I could live with all the other symptoms, if there was no significant cognitive impact, if I still had my basic mental clarity & stamina. Along with disrupted personal relationships, I find the cognitive losses the most difficult, costly, depressing, and humiliating to deal with.

Sean and George, I totally agree with you... I can just about cope with a reduction in my activities... It's the loss of my imagination, thoughts, memories, positive emotions etc etc etc, that has the most impact, along with the negative emotions and mental agitation.

 

[Recovery Soon]

My greatest fear is that even if we get effective treatment, at least some patients will be left with long term organic damage. In particular, cardio-vascular and neurological (mainly cognitive).

I find the cognitive losses the most difficult, costly, depressing, and humiliating to deal with.

My theory is that the cognitive functions will fully return. On some days, there are moments and sometimes hours, of sharp mental clarity. That suggests to me that the cognitive dysfunction is more a function of inflammation than permanent damage- and that full functionality will completely restore one day. At least that what I keep telling myself.

 

[Jemal]

My theory is that the cognitive functions will fully return. On some days, there are moments and sometimes hours, of sharp mental clarity. That suggests to me that the cognitive dysfunction is more a function of inflammation than permanent damage- and that full functionality will completely restore one day. At least that what I keep telling myself.

I also believe that most of the damage can be undone, even for patients that have been ill for 30+ years. Several researchers and doctors have suggested the same, like Judy Mikovits. Many of our symptoms seem to be caused by inflammation. Take away the inflammation and most of the damage will probably heal. I don't think we are really losing function in limbs or organs (something that does happen in MS for example).

 

[pictureofhealth]

Yup I know that one! Can so relate to that! When I was first starting to get ill, I managed to set fire to a long sleeved dressing gown I was wearing Luckily as the flame went up one sleeve, across the back and down the other - it somehow missed my hair which just happened to be tucked into the collar for some bizarre reason!

The flame self extinguished before I could guess what was happening - must have been a flame retardant fabric or similiar - the only indication was a flash of light and a whiff of something burning! The whole thing was over before I realised what had actually happened.

I can laugh about it now, but I realised immediately how lucky I had been.

It certainly puts a whole new spin on illness and 'inflammation'.

 

[Mark]

Well it looks like MS can be reversed, so I'm looking on the positive side regarding cognitive dysfunction...

http://www.bbc.co.uk/news/health-11913689

 

[George]

Wow Mark that's an amazing article. I don't know how you find all these goodies. Hey, Maybe this is where the UK can invest it's money. They could be hero's at treating MS. We can send you all our MS patients for treatment and you can send us all of the ME/CFS patients. Patient swapping. Could be the new export, import business. Or maybe a reality how. (grins)

 

[Mark]

Wow Mark that's an amazing article. I don't know how you find all these goodies.

Just UK google news really George. It's amazing how countries only publicise their domestic research in the press. I guess you can see the UK version of googlenews just by adding something like uk. to the front of the URL, if you want to check out the view from the other side of the pond. Anyway, always nice to see my country doing something useful There's a lot of good science going on over here as well, it has to be said...just not into ME...

 

[Esther12]

Surely we've got to get some big news before X-mas.

What's taking so long? It's been well over a year now. BWG results were expected nearly a month ago.

I've got a hunger for science gossip.

 

[Sean]

I am inclined to agree that most of our cognitive symptoms are inflammation based, and possibly most of our other symptoms, and that fixing that might fix the symptoms. Just find it hard to see how we can be so seriously and systemically sick for so long, without some secondary chronic damage. But that MS story is good news, so maybe we can get back to full health, or something close to it, with the right treatment.

 

[Recovery Soon]

Well it looks like MS can be reversed, so I'm looking on the positive side regarding cognitive dysfunction...

http://www.bbc.co.uk/news/health-11913689

If they can actually find a way to trigger the brain to repair it's own myelin sheath in degenerated neurons- than anything is possible.

It would be like re-insulating all the faulty wiring in a house without specifically knowing which wires have lost their insulation.

It's inconceivable to me.

 

[urbantravels]

Surely we've got to get some big news before X-mas.

What's taking so long? It's been well over a year now. BWG results were expected nearly a month ago.

I've got a hunger for science gossip.

I'm right there with you. I'm pretty much monitoring the internet every waking hour. I hate the start of the weekend because there's not going to be any NEWS on weekends. And when you're disabled, it's not like weekends are any less stressful than any other day of the week. :In bed:

 

[alex3619]

HI everyone, I am less than convinced that purely neurological damage may be permanent. I am much more concerned about cardiac and vascular remodeling. Changes in haemodynamics, cardiac hypertrophy and ongoing assault by elastase are likely to have permanent consequences. Bye, Alex

 

[Esther12]

I'm pretty much monitoring the internet every waking hour.

I've gone through patches like that. Right now I'm only googling XMRV about four times a day!

re the neurological stuff: I've recently started getting migraines and vertigo, but previously my brain-fog stuff just felt like fatigue. Being exhausted can really make cognitive stuff more difficult (when I was healthy and missed a nights sleep, by the evening of the next day I wouldn't be much use to anyone). It could be that resolving the fatigue problem will also resolve a lot of the stuff that we think of as neurological.

 

[George]

HI everyone, I am less than convinced that purely neurological damage may be permanent. I am much more concerned about cardiac and vascular remodeling. Changes in haemodynamics, cardiac hypertrophy and ongoing assault by elastase are likely to have permanent consequences. Bye, Alex

True Alex, I find the cognative is the one that weighs on my mind the most. (grins) But the cardiac problems are probably the most serious. The costant high heart rate, the shortness of breath, the low blood volume leading to vertigo and feeling of leadeness when I stand for more than a few moments. It will be interesting to see what cardiologist actually have to say about it once we get some on board!