When will we have the first useful results/summaries?

[guest]

Hi,

one problem I have encountered lately is that despite the fact that we have so many new studies and results I still cannot show anything useful to other people to make them understand what XMRV/MLVs are.

Sure we have the science study but all it does is say that people with CFS have a virus. So even if you don't go into details about the contradicting studies people will ask, "Well I don't know what CFS is, sounds like a little fatigue, could you pls tell me more about what the virus does?" The answer...I don't know and there hasn't been any paper about how XMRV causes the symptoms we have...

If you ask people what HIV is, they say that it kills people and that is enough. 90% have no clue about what symptom it causes, they just know that it's a very nasty virus.

When do you think will we have the first useful summary or paper that shows how XMRV/MLV causes symptoms?

 

[SickOfSickness]

Well that's a good question. I think they're getting closer to saying that XMRV "causes" CFS symptoms but not yet? That would be pretty bad reporting for someone to start writing that until they do different research. That doesn't just prove the presence of XMRV in CFS patients. I think anyone intelligent should be interested in the current research. They should not need it to be all nice and neat in one article. This is brand new stuff. Either they are willing to look at a few different articles and look at the LIKELY connections, or they shouldn't be looking at all for a while, until it's right in their face and summarized on CNN someday. (You can probably tell I am frustrated by this too.)

 

[Sunshine]

Here's the deal.

Until the Holy Grail of a new CFS (or what XMRV+ CFS becomes - HGRAD?) biomarker is found that only people with XMRV infection have (consequence of XMRV causing CFS), scientists may well have to go back to what was found already and that will take huge funding and time. If so, it's going to take a while. (understatement). For example, we know inflammatory cytokines are raised in CFS, a unique finding, good enough to be a bio-marker according to Immunologist Dr Nancy Klimas.

So to this.......... you'd need something like:

50 people XMRV+ with Fukuda/Canadian critera CFS all get tested.
Hypothetical result: 100% have abnormal cytokines.

Vs

50 people XMRV - with Fukuda/Canadian critera CFS all get tested.
Hypothetical result: 0% have abnormal cytokines.

Hypothetical Conclusion:
XMRV is uniquely correlated with inflammatory cytokine expression only found in XMRV+ CFS (HGRAD?) and no other disease. Inflammatory cytokines cause pain and flu like feelings, classical of CFS. If only people with XMRV have this finding, then for the first time scientists can say for sure, XMRV causes the infected feeling and immune activation/pain in people with CFS.

Repeat this comparison style testing, and get high % in all of the following in XMRV+ CFS, and you're laughing as it would clearly explain the symptoms of 'CFS' and directly link them to XMRV:

Studies on oxidative stress (e.g. Dr Martin Paul's work).
Low blood volume CFS (e.g Dr Bell)
Reduced blood flow to the brain CFS (Hypoperfusion on SPECT scan, Dr Byron Hyde etc)
Poor neuropsychometric scores (reduced IQ)
People with POTS and nervous system dysfunction in CFS
Cheney's cardiac diastolic heart failure CFS patients
Natural Killer Cell dysfunction in CFS

Etc Etc.

Time wise, it would be much simpler for the all mighty to do us a favour and just help scientists find a unique biomarker in XMRV+ CFS (Or what XMRV+ CFS becomes), which some would say the WPI are working on rather quickly rather than going back in time and waiting another 5-10 years+ of repeating old research. Studying CFS patients is not enough, people need to have something unique, and to start with that needs to be the infection (XMRV). Then a unique 'damage' needs to be proven, like CD4 depletion was in AIDS. Maybe this is NKC dysfunction in CFS.

WPI know that all the research showing classic biological abnormalities in CFS can be explained by a retroviral infection. So they looked, and found one. If WPI and friendly others can have another 'light bulb' moment, then we can all rejoice and maybe within 12 months a XMRV+ secondary biomarker (consequence of XMRV that causes CFS) could be found that links all past research together in a giant map of point to point eureka moments of understanding. What makes this all possible is funding, and the funding is currently very low. IF the NIH decide to grant funding at the 1st International Conference on XMRV, (or after) towards biomedical research in CFS everyone's job gets a lot easier and the symptoms of CFS can be explained and proven by a single causative agent. (Which is exactly what the UNUM and psychiatric lobby do NOT want, which is why we are told to do CBT, exercise and take prozac).

It may be that XMRV+ people are given a new label relatively soon, which would be a lot easier as then scientists could know the group they are actually studying. The CDC are stating that people with neurological disease cannot have CFS. Yet to many Americans, CFS is a neuro immune disease. We need direction and organisation and not silence. Lets see after this XMRV conference what's going to happen.

I'm sure we'll get some ideas in the next 7 days or so. If not, we'll all have to hibernate for winter and come out next spring.

 

[guest]

I'm sure we'll get some ideas in the next 7 days or so. If not, we'll all have to hibernate for winter and come out next spring.

I take the seven days. *g* I hope you are right and things speed up a little bit into the right direction.

 

[Bob]

Hi Diesel...

I totally understand your frustration here... We do need just a bit more information don't we!

I'm finding that we are at quite a frustrating point in the research right now... We seem to be tantalisingly close to an answer, but there's just not yet quite enough evidence to totally convince me that XMRV/PMRV is the cause of ME for the majority of ME patients... maybe that will change this afternoon... So much evidence is now pointing towards this virus, and yet still many members of this forum are testing negative, so we don't appear to have the full answer just yet...

We still need to find out how many variants of the retrovirus there are, and how to test for them all.
We need to have a much larger study done with many hundreds of ME patients.
We need studies done using various diagnostic criteria to test subsets of patients.
And we need some evidence that the virus/viruses actually cause ME.

It hasn't yet been proved that XMRVs or PMRVs actually cause ME in those who test positive (although I'd put money on it myself)...
But Judy Mikovits has indicated that she has now done some significant research linking XMRV with immune irregularities (probably just like Sunshine describes, above), which is the first time that this has been done. This is moving towards proving the 'causal' model of XMRV as it will directly link XMRV with illness symptoms. Judy says this research will be published towards the end of the year.

I guess that until someone experiences ME for themselves, then they can't know exactly what it's like... unless they are very open minded and really take an interest... This has been our age-old problem hasn't it! People just don't understand exactly what we are experiencing.
I tell people that it feels like I've got flu all the time... achy joints, muscle pain, weakness, exhaustion etc. And that it also feels like a permanent severe hang-over. No one really believes me... I do get sympathy but they all think I'm suffering from depression.

But it might be a totally different story by the end of the international XMRV conference!

Actually, I did have some success in convincing one friend about the retrovirus... I explained the research to him and he seemed totally convinced by it!
I tell people that XMRV is a newly discovered human retrovirus, and that it's only the third known human retrovirus, HIV being another, and HTLV (which causes cancer) being another... and so I tell them that it's similar to HIV... and that gets them thinking! It's a risk to compare it to HIV because you don't know how people will react to that... so I only tell my close friends. But I tell them that they've found the virus in 97% of ME patients in the WPI study... and 86% of ME patients in the second study... It's quite convincing when you put it like that!

 

[pine108kell]

As no one yet knows any symptoms caused by XMRV virus. It will be some time, although I am glad to see it is being taken seriously by some in the research community.

To contrast the hypothesis above, it could just as easily turn out that some people with cytokine abnormalities, XMRV- and all CFS symptoms are just as sick as those that are XMRV+ with virtually the same abnormalities and symptoms. In that case XMRV may or may not be causing most of the problems in the XMRV+ patients but clearly is not in the XMRV- patients (unless there is a problems with the test, which would hopefully have been worked out by this time).

Everyone is speculating a great deal right now beyond what the publish studies have actually shown.

 

[guest]

Hi Diesel...


I guess that until someone experiences ME for themselves, then they can't know exactly what it's like... unless they are very open minded and really take an interest... This has been our age-old problem hasn't it! People just don't understand exactly what we are experiencing.
I tell people that it feels like I've got flu all the time... achy joints, muscle pain, weakness, exhaustion etc. And that it also feels like a permanent severe hang-over. No one really believes me... I do get sympathy but they all think I'm suffering from depression.

Thanks a lot for your answer, Bob. This is exactly what I am experiencing. I don't tell anyone about CFS anymore because in my eyes at this point of time it makes no sense and maybe is even detrimental as long as you don't talk to someone who is a little bit more experienced regarding this field. For me life sometimes feels so unbelievable surreal (probably related to low blood flow in my brain but also related to the fact that noone believes in PWCs). Some people try to understand it but they simple can't. It seems like their brain is protecting them from going deeper into this matter because it's so hard to understand what CFS means. I'm looking forward to these days now. Hopefully we get more science.

 

[Bob]

Thanks a lot for your answer, Bob. This is exactly what I am experiencing. I don't tell anyone about CFS anymore because in my eyes at this point of time it makes no sense and maybe is even detrimental as long as you don't talk to someone who is a little bit more experienced regarding this field. For me life sometimes feels so unbelievable surreal (probably related to low blood flow in my brain but also related to the fact that noone believes in PWCs). Some people try to understand it but they simple can't. It seems like their brain is protecting them from going deeper into this matter because it's so hard to understand what CFS means. I'm looking forward to these days now. Hopefully we get more science.

I have the same experiences Diesel...

I know what you mean about it being surreal... I often have moments where I have to stop and ask myself if this is real... Sometimes it seems like a long sick joke is being played on me, or that I am dreaming.

I think that often people won't let their brains go into the unknown... It's a bit scary for us to explore the unknown... ME is unknown territory for other people, and it's easier for them to deny it than to get to grips with it. I don't really blame people but sometimes I wish people would just ask me how it feels for me, or do a bit of reading up on it (i.e. take an interest.)
It's really strange that I think I've only ever had one friend ask me what the symptoms of ME are... And one visiting work-man asked me as well (a complete stranger)...

I do tend to tell people that I've got ME, but I leave it there, and never try to convince anyone how ill I am... At the end of the day, it doesn't matter if people believe me or not because I know the truth... But of course, I wouldn't feel so confident about that if I hadn't got my ME friends and contacts who validate my experience.

Apologies to everyone for being totally off-topic!

 

[paddygirl]

I'm in an odd situation, I've had very slow onset FM which has now become FM/ME.

I have worked with the same young woman for the last ten years in a small office of 7 people. She has now become my manager which helped greatly as she knew what a worker I was and how ill and frustrated I became over time.

She came ill herself five years ago after her first child and almost bedbound two years ago after her second child. I think I knew early on what was wrong with her and eventually it was confirmed.

We are 'lucky' in that we have someone to share our story with each day. For example, last week I printed off the Lo/Alter paper and the PNAS paper for my Rheum doctor, and he patted me on the head and said not to believe everything I read in womans magazines. (As if I had time, I'm always on the internet)

We get to laugh and sometimes cry about the mess and chaos of our lives caused by operating at 40% of capacity. I see her forgetting words and names and going quiet from pain, or tearful at the way she can't run about with her kids. We both bemoan our lack of social life and cheer with every victory of the WPI. She is still getting some disbelief from family as I am, but to have this instant understanding from someone I see nearly every day is fantastic.

I'm trying to get her and her husband to come to the njcfsac October 17th meeting with Dr Mikovits to finally dispel any lingering doubts her husband may have. He has had quite a bit of whispering in his ear from well meaning people who talk about stress and post natal depression. She once fired a plate across the kitchen when yet another 'cure' story by a psychiatrist was mentioned.

So we are hanging in there, and very hopeful. Having someone who GETS it cannot be overestimated.:Retro smile:

 

[Bob]

Hi paddygirl...

One of my old closest friends has just come to the conclusion that he has gradual onset ME.
He started getting ill about 7 years ago, and didn't know it was ME until recently as he has become more and more ill...
It's strange because I got ill 7 years ago with sudden onset ME... Strange that we should both get ill at about the same time.

Although I wish he wasn't ill, I'm now able to tune in with him and talk about both our illnesses and it is really nice to be able to pick up the phone to someone you know really well and have a chat about everything, and to totally understand each other.

I also find that it's nice to meet people with ME locally, if possible, if only for an hour a month...
We have a small group of people with ME in my town who meet up for an hour a month for a drink... it gives me a feeling of comradeship and moral support...
We all met online... what would we all do without the internet?!

Bob

 

[ixchelkali]

Diesel, I think it will be a while yet. There's still a fair amount of research to be done first. Even when there are enough replication studies to convince the scientific community that the association with ME/CFS is real, they still need to demonstrate causation. Then they need to figure out the mechanics of how it causes the symptoms of ME/CFS.

In other words, they have to figure out what the answers are before they can come up with a simple summary of those answers. Even if it went at blinding speed, for science, I think it would be at least a couple of years. And with the lack of funding, the ignorance that ME/CFS is serious, and some influencial people intentionally muddying the waters and discrediting the research, I think it is likely to take longer. Just my hunch. But even though it's hard to be patient when you're sick and hoping to get back your life, the good news is that at long last it's happening. The research is starting.

Maybe in the meantime you can tell people that the disease messes up your nervous system and your immune system, and that they've found a retrovirus that they think might turn out to be the cause.

 

[mikipe2]

I haven't read all of the posts, so I'm sorry if I'm repeating someone else.

The hypothesis that I subscribe to at the moment is that XMRV/MLVs don't cause all of the symptoms of CFS, they attack the immune system in such a way that Herpes family viruses (particularly Epstein Barr Virus, Cytomegalovirus, HHV6) remain chronically activated, so it's like you're constantly sick (to varying degrees) with Glandular Fever / Mono, or similar illnesses, as well as any other viruses that remain chronically activated.

This would explain why symptom presentation varies between patients, and at various times in your illness, and would explain why some/many (%) PWCs in particular subsets have had significant improvement with antivirals that inhibit the replication of herpes family viruses (See Dr Martin Lerner's latest paper especially).

 

[Bob]

I haven't read all of the posts, so I'm sorry if I'm repeating someone else.

The hypothesis that I subscribe to at the moment is that XMRV/MLVs don't cause all of the symptoms of CFS, they attack the immune system in such a way that Herpes family viruses (particularly Epstein Barr Virus, Cytomegalovirus, HHV6) remain chronically activated, so it's like you're constantly sick (to varying degrees) with Glandular Fever / Mono, or similar illnesses, as well as any other viruses that remain chronically activated.

This would explain why symptom presentation varies between patients, and at various times in your illness, and would explain why some/many (%) PWCs in particular subsets have had significant improvement with antivirals that inhibit the replication of herpes family viruses (See Dr Martin Lerner's latest paper especially).

Hi mikipe...
Yes, that makes a lot of sense...
And it's very much the same way that HIV works, which also makes sense, seeing as they are both retroviruses.