Dr. Lombardi is Research Director

[kurt]

Talk about taking a positive post and turning the hope it was meant to give upside down, what's up? Why are some so against XMRV as a possible cause of CFS?

In my case, I see the evidence and am simply not convinced at this time that XMRV is a viable explanation for CFS. Initially I was very open to XMRV, but as the evidence against it stacked up, it seemed that many of the pro-XMRV arguments were conspiratorial and being promoted by patients with one-sided political agendas. Personally, I try to stay away from the politics and am definitely not a conspiracy theorist. Rather, I am waiting to see a strong scientific consensus emerge. No doubt there are still many points of evidence to be presented by both sides.

Here is the basis for my view, as far as I have seen most of the arguments favoring XMRV can not pass some fundamental tests about CFS. Despite people saying regularly that XMRV is the most credible explanation yet for CFS, I think the evidence shows it is one of the weaker explanations. For instance, if CFS were caused by a blood-borne pathogen, we would see that pattern (blood-borne transmission) in the epidemiology, but we don't in most cases. That is not to say XMRV is not potentially disease causing, it might be, but rather that there is just not good evidence it is causing THIS disease.

I did not write this to offer any sort of proof about XMRV. I am simply offering my thoughts and feelings and why I am still optimistic about XMRV. I also wrote it to offer hope to others and as a counter to the prevailing attitude of doom and gloom regarding XMRV that has been prevalent on the forums recently.

False hope among extremely sick people might seem like a good idea to some, but there are also people here who may literally kill themselves if they find out that a hoped-for solution is not going to materialize. A certain percent of the ME/CFS population has emotional stability problems, on top of their CFS. So this is a very, very real risk. There may be people who want to believe as you do, and that is fine. Just don't expect everyone to agree. I will continue to present the evidence as I see it.

 

[currer]

Kurt, this has been discussed before. HTLV1 has a similar transmission pattern and is a retrovirus.

However I think it is futile for us to discuss these points because so much is unknown yet. We do not know what the latest research is saying, because it is not published, and even if we did, at this early stage, there would still be much more that is unknown about XMRV than what is known.
The science should concentrate on finding the truth, not on hampering research into XMRV.

Why cant the WPIs research be published first and criticised after? Isn't that science? And wouldn't we all be having a better informed discussion if this research which is so deplored were published? And wouldn't we know the truth quicker, couldn't XMRV be disproved even more quickly if the WPI research were published? So why shouldn't it be published? What is wrong with having the facts to work on?

If Dr. Alter feels he can support the WPIs research, I believe him. It is vital that this research on XMRV continue and is not shut down prematurely. There is serendipity in science, strange connections can turn up, that is how truly new ideas are born, and it takes courage to think in new ways. What is wrong with that? So why this outcry? If a bunch of stupid patients want to believe half-baked theories about retroviruses why is that a problem?

I believe XMRV is threatening because of the validation it will give us.

Although personally I think if XMRV works out treatments will take longer than people would like to believe.
However I think this debate is not really about XMRV, or retroviruses, even on the patient side. Sufferers really want XMRV to be causative because then they could demand the respect and care they need and deserve.
It is the change to our status that is disturbing to some. And yes, kurt, that is political.

NOW AN IMPORTANT POINT. LISTEN!
Also kurt, people do not harm themselves because of the loss of a false hope.
They harm themselves because of social exclusion, poverty, and rejection by those they turn to for help.

People with CFS/ME are who ill and cannot work find their problems compounded by the ignorance and misinformation they have to struggle with, the lack of appropriate medical care, the denial of welfare benefit, housing problems, employment problems, problems with thier friends and families not understanding, and poverty.

These are the real problems which overwhelm some. If sufferers had adequate financial support, medical care, acceptance and hope, even in the absence of a known cause for this illness, (which is the case for many diseases, the cause of most are unknown), they would be able to live with their illness without despair.

The persistent promotion of false psychogenic theories destroys our hope that we will ever eventually obtain proper medical care.

We humans are social animals. Social exclusion is destructive, almost as damaging as the illness.
We suffer a double burden.
I AM GRATEFUL TO DR MIKOVITS AND DR ALTER FOR UNDERSTANDING THIS.
MANY RESEARCHERS DO NOT.

 

[Ernie]

Conspiracy has nothing to do with it but carelessnes is a real possibility where humans are concerned: http://www.retrovirology.com/content/6/1/86

Yes we are very very ill and a newly discovered cancer/neuroimmune causing new human retrovirus is highly possible. Just look at what the FDA has approved and then had to recall over the years. People don't normally think about what is safe in products and such. They trust that everything is ok. That is until they end up sick and then wonder how it happened. http://www.fda.gov/Safety/Recalls/default.htm Or and here is what they found in the cord blood that goes directly into infants in the womb. Several of the products were FDA approved: http://www.suite101.com/content/toxic-chemicals-found-in-cord-blood-of-newborns-a218417

 

[Jenny]

False hope among extremely sick people might seem like a good idea to some, but there are also people here who may literally kill themselves if they find out that a hoped-for solution is not going to materialize.

I'm afraid I have to agree with you Kurt. I'm very worried that some people have so much emotional investment in XMRV. If it doesn't work out, I do think some people will be devastated and lives will be at risk.

Jenny

 

[ukxmrv]

People are already killing themselves and have been doing so for a long time. I've lost close friends to suicide through ME.

On the week of the Science paper one of the London ME people threw herself under a train. Would it have made any difference if she had lived to read the paper and hear the hope of XMRV and the WPI? We don't know.

Since the Science paper was released I have heard of less suicides. More hope and better mental health in that way in many people who had been demoralised. Will this change - don't know.

Patients aren't stupid. So much money is being spent on worthless research that doesn't help answer the important questions on XMRV. We need the right research answering the right questions, done well. That is is not happening is the real scandal.

For every pound spent disproving XMRV they should be forced to spend 10x trying to find what they think is the cause of ME.

I put the potential and real suicides down to this lack of hope and support from these scientists. If they don't think XMRV causes ME then they should be finding what does.

 

[pictureofhealth]

.. We need the right research answering the right questions, done well. That is is not happening is the real scandal.

For every pound spent disproving XMRV they should be forced to spend 10x trying to find what they think is the cause of ME.

I put the potential and real suicides down to this lack of hope and support from these scientists. If they don't think XMRV causes ME then they should be finding what does.

Yes, agree. It would be encouraging to think that if XMRV doesn't pan out, that high calibre research will continue into finding the cause(s) of ME and that scientists the world over will pursue this as enthusiastically as they have pursued research into the cause of other medical conditions.

It is the fear that ME will be re consigned to the medical rubbish heap, or worse, the psychology heap for another quarter of a century, that will result in loss of hope and suicides - in addition to the burden of living with an inflammatory illness that affects the brain and immune system.

 

[Jenny]

I agree with all you say ukxmrv. We know of hundreds of suicides. I have a friend who attempted suicide. I also had a friend who committed suicide because the treatment he and I were doing didn't work. He had such high hopes for this treatment and they were dashed.

I'm just worried that there might be additional suicides because of dashed hopes if XMRV doesn't pan out.

Jenny

 

[acer2000]

Why cant the WPIs research be published first and criticised after? Isn't that science? And wouldn't we all be having a better informed discussion if this research which is so deplored were published? And wouldn't we know the truth quicker, couldn't XMRV be disproved even more quickly if the WPI research were published? So why shouldn't it be published? What is wrong with having the facts to work on?

I agree 100% and this is one of the most maddening aspects of this whole spat. If the researchers whos studies have shown no connection to XMRV for ME/CFS are so confident, why are they so allergic to the WPI putting forth their (supposedly supporting) evidence? It makes no sense. The more studies and information out there, the better the data, the easier it will be to understand the real truth - which is what everyone with CFS wants - XMRV or not.

Censoring one point of view in favor of another is not science, its not appropriate, and it won't lead to better understanding of the illness. Not to mention that even if the XMRV connection doesn't work out there might be data in the WPI unpublished studies that could lead to a completely unrelated discovery. But we will never know if they aren't allowed to be funded or published.

 

[liquid sky]

I read on one blog that a lady decided not to commit suicide after the Science paper was published. If anything, the hope of finding a cause to treat has probably kept people hanging on longer. Suicide is NOT the result of XMRV research. It is the result of the torment from the disease and the lack of help in society.

IMHO, no one needs to monitor the hopes of others. Let them have hope.

And please, publish the studies, all of them, so we can continue to progress and have hope.

 

[Jenny]

Suicide is NOT the result of XMRV research.

Who is saying that it is? That would be a very strange argument!

[/QUOTE]

IMHO, no one needs to monitor the hopes of others. Let them have hope.

[/QUOTE]

I don't think anyone is doing any 'monitoring' - some of us are just concerned.

 

[Bob]

Possibly, XMRV is giving some people a glimmer of hope that they didn't have before.
So maybe a glimmer of hope, based on uncertain science, is better than no hope?
XMRV has certainly given me, personally, an enormous amount of hope over the past year or so.

Some patients may well be devastated if XMRV doesn't work out, but as other posters have already said, this will be because of the quality of their lives, not because of a research program.

If proper support systems were in place for us all, then I'm certain there wouldn't be so many suicides in the ME community.

I agree (with what other posters have said previously) that it might not be so wise to worry about other people's hopes, even if we are coming from a place of compassion... It can seem a bit like an attempt to censor people's hopes because someone else knows what's best for them.

Thinking positively, personally, I think that if XMRV doesn't end up giving us the answers we are looking for, there is still very much positive to hold onto at the moment, because of what XMRV has already given us in terms of research openings, research funding opportunities, increased interest in the disease, and increased recognition and status for the disease. I think that things have changed massively for us over the last year or so, since the XMRV-CFS connection was discovered, and the new developments are not going to stop.

And as someone else has also said, XMRV may well lead to other discoveries through serendipity, or just because it has created such a large interest in ME/CFS.

But I agree with Riley, that XMRV is still very much alive, and the original study has not yet been disproven.

 

[froufox]

Well said currer, I wholeheartedly agree with your excellent post! Regarding why people might choose to end their own lives, I think that it is a completely normal even appropriate human reaction to feel hopeless in the circumstances that people with ME have had to put up with, and as we know from research, people who feel hopeless about their situation are far more likely to commit suicide.

Also to Kurt I've never seen any convincing evidence to suggest that some people with ME are more unstable emotionally than the rest of the population. I'm not sure know how you could distinguish between emotional instability and the symptoms of ME/CFS anyway, since as we know that hormone imbalances, pro-inflammatory cytokines, vitamin deficiencies etc which are all prevalent issues in ME/CFS can cause an imbalance in brain dysfunction/mood. So how can you distinguish between regular emotional instability and emotional instability that is separate from, or as you say "on top of" ME/CFS?

Kurt, this has been discussed before. HTLV1 has a similar transmission pattern and is a retrovirus.

However I think it is futile for us to discuss these points because so much is unknown yet. We do not know what the latest research is saying, because it is not published, and even if we did, at this early stage, there would still be much more that is unknown about XMRV than what is known.
The science should concentrate on finding the truth, not on hampering research into XMRV.

Why cant the WPIs research be published first and criticised after? Isn't that science? And wouldn't we all be having a better informed discussion if this research which is so deplored were published? And wouldn't we know the truth quicker, couldn't XMRV be disproved even more quickly if the WPI research were published? So why shouldn't it be published? What is wrong with having the facts to work on?

If Dr. Alter feels he can support the WPIs research, I believe him. It is vital that this research on XMRV continue and is not shut down prematurely. There is serendipity in science, strange connections can turn up, that is how truly new ideas are born, and it takes courage to think in new ways. What is wrong with that? So why this outcry? If a bunch of stupid patients want to believe half-baked theories about retroviruses why is that a problem?

I believe XMRV is threatening because of the validation it will give us.

Although personally I think if XMRV works out treatments will take longer than people would like to believe.
However I think this debate is not really about XMRV, or retroviruses, even on the patient side. Sufferers really want XMRV to be causative because then they could demand the respect and care they need and deserve.
It is the change to our status that is disturbing to some. And yes, kurt, that is political.

NOW AN IMPORTANT POINT. LISTEN!
Also kurt, people do not harm themselves because of the loss of a false hope.
They harm themselves because of social exclusion, poverty, and rejection by those they turn to for help.

People with CFS/ME are who ill and cannot work find their problems compounded by the ignorance and misinformation they have to struggle with, the lack of appropriate medical care, the denial of welfare benefit, housing problems, employment problems, problems with thier friends and families not understanding, and poverty.

These are the real problems which overwhelm some. If sufferers had adequate financial support, medical care, acceptance and hope, even in the absence of a known cause for this illness, (which is the case for many diseases, the cause of most are unknown), they would be able to live with their illness without despair.

The persistent promotion of false psychogenic theories destroys our hope that we will ever eventually obtain proper medical care.

We humans are social animals. Social exclusion is destructive, almost as damaging as the illness.
We suffer a double burden.
I AM GRATEFUL TO DR MIKOVITS AND DR ALTER FOR UNDERSTANDING THIS.
MANY RESEARCHERS DO NOT.

 

[toddm1960]

Just the fact that one side of this science is being silenced should tell you all you need to know. This has nothing to do with Judy or WPI, it's all about the CFS connection. All we can hope for is more and more evidence to mount, more proof confirming the original study and somehow, someway it's pushed out into the light of day. Even then I doubt the government will give in. This is a 30 year fight (to date) what makes you think they'll give up here? They wont.

 

[omegaman]

, I think the evidence shows it is one of the weaker explanations. For instance, if CFS were caused by a blood-borne pathogen, we would see that pattern (blood-borne transmission) in the epidemiology, but we don't in most cases. That is not to say XMRV is not potentially disease causing, it might be, but rather that there is just not good evidence it is causing THIS disease.

.

What epidemiological studies have been done on ME and CFS that looked at the incident of ME within families and or sexual partners? I believe this is an area where there is a dearth of studies available.

Judging by the family prevelancy poll on this forum there seems to be an extremely high incident of ME within families. I believe above 30% of responders had an immediate member of there family with ME/CFS . That strikes me as a very high number which could be consistent with an infectious agent.

 

[Bob]

I'm always forgetting things, and I'd forgotten the following stuff, so here's a little reminder of what the WPI has in store for us, for the benefit of other people with a bad memory...

"Sequence Diversity is Our Friend" - Dr LeGrice referred to the genetic homogeneity of the virus in the Science paper - a red flag because contaminants don't mutate but viruses do but this has always been a weak point because it was founded, as I remember, on the sequencing of only two and half strains. Dr. Mikovits pointed out that as XMRV is studied more the WPI is finding more and more sequence variation - a very good sign.

The X Variant and P-Variants are not Variants at all But Separate Species -Alter/Lo are reportedly fleshing out the full genetic sequences of their 'pMLV she's" but the WPI has their samples as well (hundreds of them reportedly) and they have apparently fleshed out their sequences as well found that CFS patients contain a bevy of closely related but different viruses - not variants - which is what both LeGrice and Coffin suggested.

The evidence for several different types of MLV's in CFS is - the pMLV's from Alter and Hansen study, XMRV from the WPI study and, now confirmation of the pMLV's from the WPI. Presumably the WPI found the pMLV's in the original study but because they only sequenced 2 1/2 viruses - which looked like XMRV - the pMLV's did not make it into the original paper. Now that they've sequenced more of the several hundred isolates they have - the pMLV's are showing up; they were there from the beginning but were hidden from view.

http://forums.phoenixrising.me/show...ovits-Oct-17th&p=130898&viewfull=1#post130898

 

[WillowJ]

NOW AN IMPORTANT POINT. LISTEN!
Also kurt, people do not harm themselves because of the loss of a false hope.
They harm themselves because of social exclusion, poverty, and rejection by those they turn to for help.

People with CFS/ME are who ill and cannot work find their problems compounded by the ignorance and misinformation they have to struggle with, the lack of appropriate medical care, the denial of welfare benefit, housing problems, employment problems, problems with thier friends and families not understanding, and poverty.

These are the real problems which overwhelm some. If sufferers had adequate financial support, medical care, acceptance and hope, even in the absence of a known cause for this illness, (which is the case for many diseases, the cause of most are unknown), they would be able to live with their illness without despair.

The persistent promotion of false psychogenic theories destroys our hope that we will ever eventually obtain proper medical care.

We humans are social animals. Social exclusion is destructive, almost as damaging as the illness.
We suffer a double burden.
I AM GRATEFUL TO DR MIKOVITS AND DR ALTER FOR UNDERSTANDING THIS.
MANY RESEARCHERS DO NOT.

This is very true!

I still think XMRV is a good model for the reasons given (and with an HTLV-like transmission; this is obviously not an STD, I agree) already.

It is JUST a model so far and we all know that. However it is NOT time to dismiss XMRV yet. There is too much we do not yet know. If we give up now, we will never know. Fortunately there are many in science and in goverment who have not yet given up.

There are also lots of other things we can research that have even better treatment possibilities. The danger here is not so much XMRV individually, but that the world of medicine will do like it has done so many times before and say, oh well, it proably wasn't XMRV, this is either too hard or not real. Let's go back to our other problems we were studying before and leave the CFS people shut up in their bedrooms because we just don't want to deal with that, or we just don't care because we think their problem is not medical because we can't decipher it (since they have not tried very hard).

THAT is the danger and THAT is what we should be concerned about.

The answer to this concern is not going around telling people not to have a false hope in XMRV. The answer to this concern is promoting all the pathologies we know about (including the possibility of XMRV) and advocating for proper medical care and social support regardless of whether we ever discover an ultimate causal etiology.

 

[ixchelkali]

the lowest point for me is when professor Towers said to me that Dr Judy Mikovits is no hero and has destroyed MECFS forever and that no good researcher will want to work on MECFS again.

Well, considering that Greg Towers thinks that the "good researchers" are the likes of Simon Wessely, Peter White, and Myra McClure, this would be good news. I would be happy to have them not want to work on ME/CFS again! Greg Towers is probably afraid that ME/CFS has been destroyed as a playground for the psychobabblists.

 

[ixchelkali]

I do know from other researchers the journals are cooling down their interest in XMRV altogether now, XMRV is old news and unless something dramatically new happens, they are not going to publish more papers that just repeat the previous papers, positive or negative. (yes, negative papers are also getting rejected by publishers now). I think this is a scientific issue and not political.

This is hearsay, too, isn't it?

Kurt, of course the hints and rumors that positive studies are in the pipeline are hearsay. That's the nature of hope: it's looking forward to something good that you would like to have happen in the future. If they had already been published, we wouldn't be hoping. I just point that out because you seem to be a bit fuzzy on the concept of hope.

If I'm wrong about that, and you're really telling us that we shouldn't hope for those positive studies, well then I guess I'll just have to suggest that you hope for what you want and, please, leave me to hope for what I want. I find Riley's list a pretty good source of hope.

 

[currer]

HOPE
Giving your patient hope is part of medical care. It is known that even patients with late stage cancer should not be deprived of hope. Hope is therapeutic and necessary for healing.

Why has it never been offered to us? The State-promoted psychologisation of ME/CFS is profoundly damaging to patients and their carers, for whom is is an additional obstacle in the way of accessing proper care and symptomatic treatment. It tells us that we are not allowed to ask for medical tests and that our symptoms are never going to be investigated and hence nothing will ever be learnt from us, our illness and the symptoms we report.

We cannot even advance the understanding of our illness, even through our suffering. No-one will learn from us.

We need the hope that our illness will one day be understood medically, that proper treatments can be provided and that we can be accepted as valid sufferers from a genuine illness and that we may be able to look forward to recovery or a cure. JUST LIKE OTHER PEOPLE.

The false situation we are piut in by the psychiatrists is almost sadistic. It is as if they delight in closing doors in our face.
We are not to have any help and when a private institute tries to investigate ME/CFS there is an outcry!

The massive surge in love and support for the WPI shows how little has been done for us over the years.
The most important thing the WPI has provided has been hope. No other group of patients is expected to live without it.

 

[currer]

I agree 100% and this is one of the most maddening aspects of this whole spat. If the researchers whos studies have shown no connection to XMRV for ME/CFS are so confident, why are they so allergic to the WPI putting forth their (supposedly supporting) evidence? It makes no sense. The more studies and information out there, the better the data, the easier it will be to understand the real truth - which is what everyone with CFS wants - XMRV or not.

Censoring one point of view in favor of another is not science, its not appropriate, and it won't lead to better understanding of the illness. Not to mention that even if the XMRV connection doesn't work out there might be data in the WPI unpublished studies that could lead to a completely unrelated discovery. But we will never know if they aren't allowed to be funded or published.

I agree with you, acer2000, that there may well be new evidence among the findings of the WPI's research that could lead to a completely new understanding of ME/CFS.
That is why I find the outcry against their work and the desire to suppress it so disturbing. Most revolutions in scientific understanding have come from those people who dared to think in genuinely new and challenging ways.