The Fight is on...Imperial College XMRV Study

[Orla]

Hi Jenny, hate to be the bearer of bad news but Murphy seems to be into the psycho-social theory of ME/CFS. You can get an idea of her from a review of her book by Ellen Goudsmit (scroll down)

http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Myalgic-Encephalomyelitis/dp/1855755378

It would be interesting to hear from you if you go to talk to her,
Orla

 

[flex]

I think it's natural to congratulate oneself on improved health; it's the flip side of blaming oneself, and agonizing over the 'reason' for every crash. I'm also in the group who has sought little medical help and can now walk a mile and even sometimes work or spend time with friends (after 6 years, I'm now a 5-6 on Bell's scale), but honestly I don't know how much my self-management has to do with it. This thing seems to have its own cycles, and there's a lot of luck involved.

Plus I realize that if everyone took my approach, just getting on with life as best we can, the medical field would have no idea we existed, and no treatments, much less cures, would ever be developed. My $.02.

fresh_eyes I think all people who are ill engage in self management as well as people who are not ill. Of cousre we all know that CBT and GET are controlled management rather than giving you the dignity to understand your own body.

Relapse and remmission is a well known phenonimum in many illness, just look at MS.

Its very commendable what we all have to do every day. The advisors in these "clinics" Im sure are trying to teach a duck how to swim.

I too take very little medication but I dont experience a lot of pain apart from headaches.

Anyway lets look to the future, bring down Wessely and remain positve as ever.

Ps Anyone in the London area offering to help me with the draft of the letter to demand Wesselys suspension ?( see my thread)
Private messages welcome.

 

[Jenny]

Hi Jenny, hate to be the bearer of bad news but Murphy seems to be into the psycho-social theory of ME/CFS. You can get an idea of her from a review of her book by Ellen Goudsmit (scroll down)

http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Myalgic-Encephalomyelitis/dp/1855755378

It would be interesting to hear from you if you go to talk to her,
Orla

Oh dear! But I'm not expecting much in the way of medical treatment from her anyway. My main reasons for going are to get on the list of their current patients, just in case they offer XMRV testing at some point, and to talk to her about the suggestions our ME support group made when she asked for them.


If she's only prepared to consider psychological treatments, I'll complain to the hospital and elsewhere.

Incidentally, this clinic is under threat of closure - not sure why.

 

[flex]

Jenny,

please be aware that people considered "militant" by people like Murphy are at risk of the bombardment of furthur psycho babble and these people have alot of power. You are "rocking their boat" and their cash cow if you challenge them.

You would be surprised what they sometimes do.

 

[Alice Band]

Jenny,

Can you get a referrel to Dr Main's CFS clinic instead? It's run under St Mary's in Paddington but in fact is held at St Charles Hospital (near Ladboke Grove instead). The only reason I am mentioning this (as there is nothing in the way of biomedical treatment) is that Dr Main has worked with Dr Kerr in research before and if any London patients will be selected for XMRV research by him it's likely to be there.

 

[Robin]

Tom, I'd like to address this post because it seems to have caused a bit of discord:

I agree with this .
There are things that "work" that every individual owes it to themselves to try.
Pacing "works"
Avoidance "works"
When your whole body is overloaded with all kinds of crap and your brain is the same, why cause more problems/stress by adding more chemicals into the mix , trying to continue as normal when you can't,chasing around here and there searching for the "magic bullet".
Pay attention to those who are recovering ,forget about getting back to "normal", your body and brain may be damaged beyond total recovery that no drugs will fix.
If what is helping the recovererss costs no money what do you have to loose?
I'm off to walk a mile through the snow to enjoy a few beers and sit outside in the snow to drink and smoke cigarettes then walk back home.
I am recovering and improving day by day.

What "works" varies from patient to patient. Sharing what has benefited you is great, but telling people what they must do ignores the fact that not everyone has the potential for improvement. Most people avoid and pace by default. Some people have improved while others have spent decades with severe incapacitation.

Another poster phrased it beautifully:

It is good to hear of people who are improving, but it is very easy to fall into the trap of believing that those who don't get better or who get worse have done something wrong. It is a very instinctive reaction. We are bombarded with news stories of people who have recovered from cancer because of their positive attitude, or because they tried this herb and on and on.

Some people's bodies are just broken.

So, please Tom, be a little more sensitive!

That being said, ME/CFS exists on a spectrum of severity. Being able to walk a mile in the snow doesn't preclude being sick; and merely talking about your activity level is fine. Some people are able to work part time and full time. If we the limited discussion about activity level to only those who are very sick, we'd exclude a lot of members here.

 

[Jenny]

Jenny,

Can you get a referrel to Dr Main's CFS clinic instead? It's run under St Mary's in Paddington but in fact is held at St Charles Hospital (near Ladboke Grove instead). The only reason I am mentioning this (as there is nothing in the way of biomedical treatment) is that Dr Main has worked with Dr Kerr in research before and if any London patients will be selected for XMRV research by him it's likely to be there.

Thanks Alice. Sounds worth a go. I get most of my treatment from the Breakspear so I'm not really going to a NHS clinic hoping for treatment. (Doesn't this sound odd - what a weird situation we're in!)

Do you go there?

 

[Tom]

That aside, I sure wish I could walk a mile. I have trouble walking 6 feet to the bathroom. Pacing doesn't work for me. Avoidance doesn't work. Simply being awake, something I can't control, is incredibly draining in and of itself. People like me who are in a constant, perpetual "crash" and are subsequently bedridden don't have much of a choice, unfortunately.

Hi --been there ,done that-it's pure hell for a year ish or so, I suppose it would be thru' luck rather than anything else that enabled me to get that little bit further initially and move around the house for an hour or so.
"Eric says" biowarfare suit" or something like that.
Getting "IT" out of your system and stopping "IT" getting in are paramount.
I've read of people who have moved to tents in a room, tents or sheds in their gardens as a way of getting away from "IT"
Skin is your biggest organ? try and stop "IT" getting absorbed (could be different "IT'S") wash off "IT'S" comming out if possible/if able--of the wall bio hazard suit ,wetsuit, drysuit or something else.
Mouth is third, stone age diet is a starter and watch what you drink.
Nose --well you can't stop breathing for long, but the "IT'S" could be coming in here and any toxins etc go straight to your CPU the hyppowhatsis--gas mask?? nasal filters?? face mask--really anything that you think may help protect you.
Don't think "IT'S" come in thru' eyes or ears think these are just overload points when the rest is overloaded.
Do you have a Carer? Prime importance.
There are a few things you can try with the help of a carer if you are bedbound or virtually so---these are to help with pain and the removal of "IT'S"

Sometimes you have to Piss people off before they will even consider listening.
Hope some of the above will be of a little bit of help to you.
P.S I used to crawl to the toilet.

 

[Robin]

Sometimes you have to Piss people off before they will even consider listening.
Hope some of the above will be of a little bit of help to you.
P.S I used to crawl to the toilet.

I have no idea what the text above what's quoted meant, but, there will be no pissing people off here.

Read my post above and go over the forum rules before you post again.

 

[flex]

Holmsey, I'm very uncomfortable with the whole notion of a mental "influencing factor", since it leaves the door open to be labled as psych-patients. The notion of getting worse with stress is certainly not unique to ME/CFS. For example people with autoimmune diseases suffer relapses during periods of stress. Yet they don't need psychiatrists to manage their disease.

I can understand the use of supportive tools, whether for lifestyle adjustment, symptom management or whatever. No one would begrudge you the use of whatever tool you felt you needed, whether it was yoga, accupuncture, Gupta, or even CBT. The point is I wouldn't let my accupuncturist control my ME treatment. Or my yoga teacher for that matter. So why should the psychiatrists get to say how our disease is treated? Also CBT is not something that we have to fight or argue for. It is freely available from the NHS.

Let me give you an analogy. Let say a child has cancer. His parents take him to priest to pray for him. Nothing wrong with that. However if they took their child to the priest, and only to the priest, and not to a doctor you would say they were negligent. You might even say they were guilty of child neglect/abuse. So how is it a health service can send an ME/CFS patient for CBT and provide them with no other medical support? And yet we don't say the health service is abusing the patient. It doesn't make sense. Unless you take the position that ME/CFS is a mental disease (with physical manifestations).

If you don't take that position, then what we are facing in the NHS is abuse, plain and simple. Then you have to ask yourself the question who is orchestrating this abuse? The answer is the psychiatric-school, the chief architect of whom is Simon Wessely.

Well said garcia. Furthur point to Holmsey. If ME is a "mental disease" it ceases to be of a psychiatric nature by the very discovery of the disease. Disease is qualified by the means of change of normal appearence of an organic tissue ie/ the heart, a synovial joint, the brain etc.

Psychiatrists deal with the "mind" and are supposed to be there to deal with the full and normal range of human sentiment expression and feelings in its many normal guises.

Not any more they are purley coporate driven by their own agenda of getting more and more mental illnesses into the DSM so that they have more to charge for. Check the DSM for the "genuine mental illness" known as "mathematics disorder"

It was only in the 80s that homosexuality was taken out of the DSM as a "mental disorder".

The DSM is written by th APA. There are no discoveries it there. The Xray machine was a discovery, pennicilan was a discovery etc. Mental disorders are voted into the DSM on a show of hands by Psychiatrists

 

[Esther12]

My point is that I when I read posts here of how ill folks are in the extreme cases, I completely believe them since I have been there. But I have lost the ability to really "get it" because its been a long time for me. Imagine how hard it would be to understand CFS if you had never had it happen to you at all. It would be very understandable and forgivable if those folks only understood at a concept level, but not a gut level. Or even failed to understand at all. Even the M.D.'s.

I totally agree. We're all morons in our own way. It's frustrating, but needs to be acknowledged. I had sudden onset CFS, and don't really have any instinctive understanding as to how you can have CFS and still be working etc. I have to work at stopping myself from therefore being unfairly dismissive of those who are ill in this way. The trouble is that a lot of people give undue weight to their own instinctive beliefs and think that their own lack of understanding has some greater significance.


More on topic - we're still waiting for a reply in this comments thread: http://www.plosone.org/annotation/l...notation/6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8

It could well end up being a bit more trouble to run the test than they thought, but I'm hungry for info.

 

[fresh_eyes]

...common sense tells me that with a zero finding of XMRV in both the Wessely and the German prostate study, somebody has horribly botched the PCR testing somewhere. Look at our very own sticky polls comparing Cooperative diagnostics patients against VIPdx patients. Something is wrong, it is not a locational difference issue as so many are saying.

I agree, Levi.

On another note, this thread is completely out of control, with parallel conversations about Wessely, pacing, PCR... I sort of wish it could be divided up, because good things get brought up and then lost in the deluge. Anybody else feel the same way?

 

[Esther12]

Well,

I am no scientist. But common sense tells me that with a zero finding of XMRV in both the Wessely and the German prostate study, somebody has horribly botched the PCR testing somewhere. Look at our very own sticky polls comparing Cooperative diagnostics patients against VIPdx patients. Something is wrong, it is not a locational difference issue as so many are saying.

From my equally ignorant position, I'd agree. This is what I thought the most likely explanation was, but every scientist writing about it seems certain that a properly calibrated PCR test will be reliably accurate. It's possible that they're all caught with an unfounded shared belief which now goes unquestioned... but I tend to give greater weight to the views of people who know how PCR's work.

I saw someone mention the possibility that it could be XMRV is very difficult to transfer between humans, so the geographical differences could be explained by XMRV necessitating close contanct with (for example) a particular breed of mice only found in America. (I thought the Science paper was meant to show XMRV is being transfered between humans though? - and that it moved over from mice once?). I really don't know. It all seems a bit confusing and contradictory at the moment.

I'm becoming increasinly sceptical about XMRV just because there seems to have been no ramping up of concerns over the blood supply while replication studies were being done. If they were all supporting the WPI's initial results I'd have expected more action by now - but then, I've got no clear idea as to how blood agencies would be reacting if it was confirmed that XMRV was causing CFS and contaminating the blood supply so maybe I'm expecting some dramatic shift that would never have happened. I really want news of further replication attempts, especially those the WPI has been closely cooperating with.

 

[Hysterical Woman]

...
On another note, this thread is completely out of control, with parallel conversations about Wessely, pacing, PCR... I sort of wish it could be divided up, because good things get brought up and then lost in the deluge. Anybody else feel the same way?

Yes, thanks

 

[flex]

My point is that I when I read posts here of how ill folks are in the extreme cases, I completely believe them since I have been there. But I have lost the ability to really "get it" because its been a long time for me. Imagine how hard it would be to understand CFS if you had never had it happen to you at all. It would be very understandable and forgivable if those folks only understood at a concept level, but not a gut level. Or even failed to understand at all. Even the M.D.'s.

Levi,

what exactly is the job of an MD then if its not to understand illness. Why do they get paid 100s of thousands of dollars a year. Surely its not to be administrative blocks to medical treatment and scientific advancement, all under state control not only by the NHS but also by the CDC.

If its just down to us to understand it why cant we research our symptoms ourselves and demand the treatment cutting the MDs out of the loop.

Im not saying thats what I want but I do expect doctors to listen to patients, gain their knowledge and then pass that onto the advancement of their other patients.

What hope do we have if we excuse doctors not to get it at all. Would Mankind have ceased to exist now.

Not only that, one of the underlying topics in this thread is DELIBERATE medical denial and corruption.

The London XMRV studies were a farce and were deliberatly misleading.

 

[Tom]

From Governments downward and from Doctors upwards, and anyone else who may be able to help us if they had better understanding of what we are living with/thru'.

I think I agreed with "mithriel" about bodies being broken, mine most certainly is.This about perhaps never recovering is broadcast on several different acclaimed websites.
You said most people avoid and pace as default, i don't think I said anything different. I certainly never wrote or implied the word "must".It also took around 30+ years of getting worse and worse and hell and no money before I finally got a diagnosis. In my estimate if I can achieve a recovery to 50% of what a healthy 60+ year old is I will be extremely fortunate.

Before I was diagnosed 10+ years ago I used to fall asleep at the computer waiting for a web page to load(true) I couldn't type,brain and fingers wern't talking to each other and fingers could just click a mouse, I tried various speach to operate software Dragon etc , no matter how hard I tried non of them were able to work or comprehend my Scottish accent. I altered the way I spoke , tried phony accents to no avail.
I type with a Scottish accent

 

[Dr. Yes]

On another note, this thread is completely out of control, with parallel conversations about Wessely, pacing, PCR... I sort of wish it could be divided up, because good things get brought up and then lost in the deluge. Anybody else feel the same way?

I definitely agree, Fe. An 80 or 90 page thread is really getting out of hand. It means that people new to the thread either have to read all 90 pages or just contribute whatever they can having read only recent posts. The result is that many of the same issues get brought up and re-argued about over and over, interesting new ideas get swamped, and the original discussion gets lost because by this time, no one has read it or can remember it!

​

 

[fresh_eyes]

I'm becoming increasinly sceptical about XMRV just because there seems to have been no ramping up of concerns over the blood supply while replication studies were being done. If they were all supporting the WPI's initial results I'd have expected more action by now...

Hi Esther12. Do you know about the dept of Health and Human Services XMRV Blood Safety Task Force?

http://www.facebook.com/notes/the-c...ating-xmrv-scientific-activities/224210115538

Sounds pretty big - Wanda Jones says they have 50-person conference calls, from all sorts of fed agencies - but my understanding is it's all *very* confidential because they don't want to alarm the public.

 

[MEKoan]

I'm becoming increasinly sceptical about XMRV just because there seems to have been no ramping up of concerns over the blood supply while replication studies were being done. If they were all supporting the WPI's initial results I'd have expected more action by now - but then, I've got no clear idea as to how blood agencies would be reacting if it was confirmed that XMRV was causing CFS and contaminating the blood supply so maybe I'm expecting some dramatic shift that would never have happened. I really want news of further replication attempts, especially those the WPI has been closely cooperating with.

I think the blood supply issue is very complicated and I don't actually expect them to move swiftly.

Testing for XMRV is proving to be more tricky than everyone would like. Do they generate anxiety about something they cannot yet track? Will people refuse to sign off on transfusions they may need during surgery. There are people using blood products every day - would they panic, sue, stop treatment... ? Will fatigued people stop giving blood along with those with ME?

There is still confusion regarding the connection between XMRV and any illness but little dispute that if you are bleeding out, you need to replace that blood.

There are so many angles to this: risk/benefit, legal and financial exposure, uncertainty surrounding everything...

Even if XMRV is susptected to be in the blood supply, there exists no standardized and cost effective test, no well defined patient population to exclude from giving blood and, so far, no replicatable link to any disease -- the way forward remains fraught.

I don't think there is a cautionary statement they could make about the blood supply which would not cause panic.

 

[Esther12]

It could well be that my expectations re blood supply are totally off. I'd have just expected some provisional measures if replications studies were continuing to show a strong link (asking donors about family members/partners with CFS?). When the Science paper was first published there was a lot of activity, and they (there was some conference? - The WPI people spoke at it?) said they'd provide more information arround the middle of November, yet nothing more seems to have been released. They could be concerned about causing a panic, but the general population seemed pretty calm about the initial news that there was a retrovirus which was circulating in the blood supply. I really don't know though, this is the first time I've followed a story like this in real-time, so I could have a misplaced sense as to how quickly things should be happening.