5th Invest in ME/CFS Conference - Programme May 24 2010

[Angela Kennedy]

I have a big problem with the term 'mood disturbances'. What does that mean? (I'm being rhetorical)

Like 'emotional lability', reported in the earlier accounts of 'ME' (Ramsay, Richardson etc.) changes of mood, and moods in general (!) are so ubiquitous among sick and well human, to actually quantify a state where one person suffers from 'mood disturbances', and another doesn't, is - well - probably impossible.

A cancer diagnosis (or even scare) will lead to frequent changes in mood, and the preponderance of certain 'moods' (concern, anxiety, etc). But then so will moving house.

I'm always concerned when ME/CFS patients are singularly posited as having mood 'disturbances' and 'disorders' - as if these were different to the rest of the chronically sick population per se or even the whole population. There is no adequate clear evidence to suggest there is a specific mood 'disturbance' as any cardinal symptom that can be specifically elucidated.

Clarity of exposition and theory, especially around 'psychological' phenomena, is what we need, at least. Even the scientists who people see as being 'on our side' are guilty of perpetuating this problem (lack of such).

 

[thegodofpleasure]

Irrespective of the science, it sounds like Dr. Huber was both naive, insensitive and rude in discrediting the work done by the WPI, in the way that she apparently did.

IMO, to do this in front of Dr. Mikovits - (especially after the prior agreement that is rumoured to have been reached the night before) and knowing that Dr. Mikovits was next up to speak, says something (hugely negative) about Dr. Huber's character. She must surely have had some prior thoughts as to what reaction that was likely to provoke !!!

Is this evidence of an arrogant streak (or hubris), manifesting in a lack of willingness to work through these problems in the interest of patients ?

If she wants to isolate herself, she is going exactly the right way about doing it.

TGOP

 

[natasa778]

rrespective of the science, it sounds like Dr. Huber was both naive, insensitive and rude in discrediting the work done by the WPI, in the way that she apparently did.

IMO, to do this in front of Dr. Mikovits - (especially after the prior agreement that is rumoured to have been reached the night before) and knowing that Dr. Mikovits was next up to speak, says something (hugely negative) about Dr. Huber's character. She must surely have had some prior thoughts as to what reaction that was likely to provoke !!!

Is this evidence of an arrogant streak (or hubris), manifesting in a lack of willingness to work through these problems in the interest of patients ?

If she wants to isolate herself, she is going exactly the right way about doing it.

TGOP

That is so true! That was the overall impression I got on the day...

Btw as Dr Yes said, when a negative study comes along that finds SOME positives, through several methods, it will be something to ponder over....

 

[Nina]

I have a big problem with the term 'mood disturbances'. What does that mean? (I'm being rhetorical)

Like 'emotional lability', reported in the earlier accounts of 'ME' (Ramsay, Richardson etc.) changes of mood, and moods in general (!) are so ubiquitous among sick and well human, to actually quantify a state where one person suffers from 'mood disturbances', and another doesn't, is - well - probably impossible.

A cancer diagnosis (or even scare) will lead to frequent changes in mood, and the preponderance of certain 'moods' (concern, anxiety, etc). But then so will moving house.

I'm always concerned when ME/CFS patients are singularly posited as having mood 'disturbances' and 'disorders' - as if these were different to the rest of the chronically sick population per se or even the whole population. There is no adequate clear evidence to suggest there is a specific mood 'disturbance' as any cardinal symptom that can be specifically elucidated.

Clarity of exposition and theory, especially around 'psychological' phenomena, is what we need, at least. Even the scientists who people see as being 'on our side' are guilty of perpetuating this problem (lack of such).

Angela, I couldn't agree more. I have been thinking about this for a long time. Especially when I look at the "healthy" people surrounding me - boy do they have "mood swings"!! Some because of the state of me, but most for other reasons (far less deserving). This makes us sound like a bunch of overly emotional sissies, which we are definitely not. Imho this is just another not-so-subtle hint at M.E. being a mind problem.

 

[girlinthesnow]

Fred,

Thanks for your astonishing notes on Dr Cheney's lecture. Did you type in the theatre, take shorthand or use a secretly stashed mic? Or maybe you have the memory of an elephant?

In any case, they are amazing and very useful. Thank you.

 

[natasa778]

btw I agree with Kurt and others in that I don't believe Huber set off with a view of disproving XMRV right from the start. My impression was she approached her study with a preconcived ideas of how to do it, it didn't work... nothing evil or conspiracy-like in that ...

But she then conducted herself in a manner of someone not about to give way, to let her ego be bruised a little bit in order to get to the bottom of why her study failed. She basically stone-walled herself with her presentation. Very unhelpful and unconstructive...

 

[Adam]

Irrespective of the science, it sounds like Dr. Huber was both naive, insensitive and rude in discrediting the work done by the WPI, in the way that she apparently did.

IMO, to do this in front of Dr. Mikovits - (especially after the prior agreement that is rumoured to have been reached the night before) and knowing that Dr. Mikovits was next up to speak, says something (hugely negative) about Dr. Huber's character. She must surely have had some prior thoughts as to what reaction that was likely to provoke !!!

Is this evidence of an arrogant streak (or hubris), manifesting in a lack of willingness to work through these problems in the interest of patients ?

If she wants to isolate herself, she is going exactly the right way about doing it.

TGOP

Nice point. No one, but no one should disrespect Judy.

I think Brigitte is suffering from UHH.

UBER HUBER HUBRIS :Retro wink:

 

[thegodofpleasure]

Uber Huber Hubris

Nice point. No one, but no one should disrespect Judy.

I think Brigitte is suffering from UHH.

UBER HUBER HUBRIS :Retro wink:

The proverb "pride goes before a fall" is thought to sum up the modern definition of hubris - let's hope so !

TGOP

 

[garcia]

btw I agree with Kurt and others in that I don't believe Huber set off with a view of disproving XMRV right from the start. My impression was she approached her study with a preconcived ideas of how to do it, it didn't work... nothing evil or conspiracy-like in that ...

But she then conducted herself in a manner of someone not about to give way, to let her ego be bruised a little bit in order to get to the bottom of why her study failed. She basically stone-walled herself with her presentation. Very unhelpful and unconstructive...

I totally agree with your assessment natasa. "Stone walled" is exactly what she did. Huber didn't find XMRV, then she used other methods and did find it. Ergo it must be contamination. Well what was the thing that was contaminated? Was it the reagent? If so which one? To jump to the conclusion of "contamination" without offering any proof is unscientific at best. Her work hasn't been peer-reviewed and she offered no proof for her contamination theory, yet she was allowed to dismiss the WPI's work just before Dr Judy spoke. The phrase "sucker punch" springs to mind. I thought Dr Judy handled herself brilliantly.

And for those who want to know why the WPI's work can't be contamination, please see Prof. Myra McClure's recent podcast in which she spells out the arguments why her work finding XMRV in Prostate Cancer is not contamination. The arguments she uses apply verbatim to the WPI's work (just substitute the contraversial "CFS" for the less contraversial "Prostate Cancer").

 

[Angela Kennedy]

Angela, I couldn't agree more. I have been thinking about this for a long time. Especially when I look at the "healthy" people surrounding me - boy do they have "mood swings"!! Some because of the state of me, but most for other reasons (far less deserving). This makes us sound like a bunch of overly emotional sissies, which we are definitely not. Imho this is just another not-so-subtle hint at M.E. being a mind problem.

Hi Nina,

Yes I think you've made an important point here about the way ME sufferers always manage to get portrayed as SINGULARLY 'emotional'.

The ubiquity of psychological phenomena in human and other animals is a major objection to all the claims made about 'ME' or 'CFS' sufferers (or those misdiagnosed as such) 'specific' psychological responses. Yet whether it's the pharmacogenomics series of articles, Wessely and his "the French don't catastrophise and that's they don't have 'CFS'" claims, claims of 'personality' types in ME/CFS, claims about 'stress' in ME/CFS etc. etc. the lack of clarity about these phenomena always leads to an assumption of at least some special psychopathology in sufferers, even in those scientists who others see as not psychogenic causation promoters. It seems to always come back to that assumption. And it's a massively unsafe assumption, but one which has prevailed despite the objections that can and should be raised to it.

 

[paddygirl]

As I type I'm lying in bed, to weak to stand and off sick from work for the last 3 weeks. I have to ring my doctor later for a sick cert which I dread, I have an impeccable record until this thing started to bite hard.
My 21 yr old daughter has just brought up lunch, and is now off to the supermarket to buy dinner , (risotto is her speciality). The ingredients I bought to cook myself will have to wait. The grass in the back garden is half mown as I ran out of juice before I could finish. I've just cancelled my trip to Portugal next week to see an old friend get married, it's her big day, why should she have to look after me?
The 2nd job I do to earn extra money is on hold and causing major anxiety. Oh and I haven't seen friends since I came back from the london Conference as I'm having a bad spell.
Yesterday a lovely neighbour saw me cry as I didn't have the strength to get in the car and drop off bags to the charity shop.

I don't think anyone would blame me if I were depressed, and until WPI and October 8th last year I would have been. I still get a bit wobbly that I can't cook dinner for my daughter or do something interesting with her. She's off to N.Y. next week to work for the summer and this will be her memory of me.

But I now believe that something is on the way for us and all the people who have been so shamefully neglected. For the first time I have hope, when the WPI opens it's doors I'll get a bank loan and head there for treatment. So thank you WPI and all the other fantastic docs for helping me to 'stabilize' my 'unstable' emotions - drug free too!

 

[Bob]

CFS Patient Advocate has posted another blog entry... regarding his opinion of Huber's behaviour at the iiME conference...
he's comes across as being quite angry about it all...

"Never seen anything like it"
http://cfspatientadvocate.blogspot.com/2010/05/never-seen-anything-like-it.html

 

[omerbasket]

CFS Patient Advocate has posted another blog entry... regarding his opinion of Huber's behaviour at the iiME conference...
he's comes across as being quite angry about it all...

"Never seen anything like it"
http://cfspatientadvocate.blogspot.com/2010/05/never-seen-anything-like-it.html

I think that what he says is probably correct. Things here start to smell too dirty. I hope real science would win at the end.

 

[fred]

Cheney made a comment that people who can't (even) find XMRV in a control group are never going to find it in a patient cohort.

And Judy said (ironically, I think) that it's strange how one reagent will find all retroviruses including XMRV and another will find all retroviruses except XMRV.

She also said that Silverman was accused of contamination in the early days of his research.

 

[lululowry]

Things here start to smell too dirty. I hope real science would win at the end.

This pushback against xmrv is real and it's been going on for 25 years. And I don't think it's just hubris and egos or a dislike of "vague" symptoms and hard-to-diagnose patients. It feels like something very big. I do wonder if it's the vaccine industry - big pharma and government - mobilizing to shut things down. I promise I am not (usually) a conspiracy theorist! It seems likely that it would involve a LOT of money and liability and I cannot think of another likely candidate.

 

[Robin]

I do wonder if it's the vaccine industry - big pharma and government - mobilizing to shut things down. I promise I am not (usually) a conspiracy theorist! It seems likely that it would involve a LOT of money and liability and I cannot think of another likely candidate.

Well, if there was a conspiracy it would probably be from long-term care insurers and possibly standard healths insuruers that wouldn't want to pay for drug coverage.

Pharma would benefit from XMRV because they could sell drugs for it, and potentially vaccines. A pharma company is doing an XMRV/CFS study -- that's a big investment -- and they're also looking into treatments already. Governments would benefit from treating CFS because we would get off the disability roles and actually start paying taxes. My disability attorney has told me that only 5% of her clients have ever gone back to work. There's is definitely a financial incentive for the government to look into XMRV.

I doubt Huber is part of some type of conspiracy; if anything she's frustrated that she didn't find it (i am too!) and like others have said before, I think her efforts were sincere. The allegations about the intent of her comportment are speculation; it's possible she was being a spoil sport or just merely clumsy. Sometimes science-types don't always have the best social graces. ;-)

 

[bullybeef]

The problem with antiretroviral drugs is they're not commercial. If 6% of the global population suddenly needed an antiviral, lets say Raltegrivir, at 647.29 ($943.98) per patient, per month, we're talking huge costs, and who knows how long it would take for that cost to decrease? The UK, for instance, charge around 7 per prescription (which is usually per month). They'd crack up laughing if you asked for a drugs with that kind of deficit.

There are innumerate reasons why governments could do without a new human retrovirus, infecting a possible figure tens time that of HIV. If they can disprove it, they will, and why wouldn't they? Remember, we're still coming out of a recession, and the reason for most illegal acts is simply money. It’s not rocket science.

 

[omerbasket]

People from the outside who would look at this thread would probably say that we like conspiracy theories. But at this point - I don't think it's impossible that one of these theories is correct or close to being correct. There are people who can profit from XMRV, but there are many who can lose.

 

[DysautonomiaXMRV]

I think its more then likely the world governments new about xmrv many years ago

Hi Village life. Files on ME are protected by the UK official Secrets act until the year 2070 (extended since 2030). Why did the UK government extend it? Why would written words on ME (an alleged behavioural disorder - but actually a brain disease) need to be kept an official secret until all ME patients are dead?

These Files are authored by the Medical Research Council and now owned by the Crown.

The Medical Research Council REFUSES to fund bio-medical research into ME (Myalgic Encephalomyeltis) and prefers to fund an actual behavioural disorder 'CFS/ME' (In UK 'CFS'ME is not a neuro disease).
The Medical Research Council was taken to court in a case to try and force them to reveal which applicants were turned down for funding into bio-medical research. The MRC won their case and it was deemed 'not in the public interest' for the public to know. Despite this ME costs the UK tax payer billions of pounds a year.

The Medical Research Council is advised by Military Psychiatrist, professor Simon Wessely who states ME patients are 'neurotic', that doctors are right in being 'disgusted' with them and that 'XMRV does not exist, at least in the UK'. A most strange set of circumstances for a person placed at the helm of CFS/ME psychiatric research, when ME is not categorized as a psychiatric illness.

Interestingly, since 1986 ME patients with Post Viral Fatigue Syndrome (which dual codes with benign Myalgic Encephalomyelitis - once refered to as Non Paralytic Polio) G93.3 ICD-10 as a neurological disease state at the World Health Organisation - cannot give blood in the UK.

The critical question arises, why would the British protect files on a condition they treat and publically state is a behavioural disorder, whilst simutaneoulsy accepting ME is a neurological disorder in the House of Lords (not in the socialised NHS health service), whilst protecting the blood supply and stating XMRV does not exist.

I leave you with a very interesting comment from Scotland, enjoy:

XENOTROPIC MURINE LEUKAEMIA VIRUS (MLV) – RELATED VIRUS (XMRV)

I have now had comments back from Scottish virologists. Clearly, your enquiry stimulated significant discussion amongst the group.

They tell me that although they would very much like to be involved in looking for an effective cause for chronic fatigue system, they believe that recent publications looking for XMRV DNA in patients with CFS is not a worthwhile exercise. I understand thet Prof. Peter Simmonds has already looked for evidence of XMRV in stored samples from CFS patients and has been unable to find any evidence of this infection. I understand it has previously been claimed that the virus has been associated with prostate cancer but again could not be found in two recent European
studies.The virologists tell me that contamination of chemicals with mouse DNA is frequent and not always recognized, and the weight of evidence is now building up to suggest that the paper
recently published by the research group in the USA may well have suffered from from problems of contamination.

The Scottish virology group remains willing to be involved in potential investigations to Link CFS with a viral infection in the future, should suitable candidates emerge.

I am sorry this does not appear to be the answer to this difficult complex condition.

Kind regards.

Source: Letter from Scottish CMO Harry Burns to Convener of Scottish Cross Party Group on ME.
NB: CMO = Chief Medical Officer

 

[natasa778]

I hear you villagelife, but on the other hand what is the cost of government not doing anything? Take autism - at the moment roughly in in 60 kids in UK has it, latest figure for the states is something like 1 in 90 (figure quite old now). Most of those children and teenagers will NEVER be able to work, in addition to that many will require round the clock care etc.

what happens when their carers are gone, who is paying for super expensive residential care. School systems are already strained to breaking point, these kids all require extra help in mainstream schools or super expensive special school places... DLA is the smalles, negligent part of the price gov/society is paying for this.

If it is linked to xmrv and eventually shown that antivirals improve symptoms it would be idiotic for any government to consider those drugs 'expensive' when put against the cost of 2.5million - someone did a rough estimate and this is the figure an 'average' person with autism costs the government throughout their lifetime, albeit limited.

So even 1000 a month in drugs is still CONSIDERABLY less a child with autism costs the state in school support staff costs, SLT, OT assessments, SEN annual reviews, carers allowances etc