Help us with the XMRV Survey - feedback, proof-reading, and comments needed

[Marco]

Marco,

I was commenting on my symptoms as a XMRV+ person and trying to feedback those that I have.

If the survey is to build a picture of XMRV+ symptoms then I'd like to include those that are relevant and major notes.

I guess you are commenting as someone who fits the Canadian criteria and who obviously feels that depression and anxiety are important. You don't know your XMRV status.

I don't see depression & anxiety as being symptoms of the disease in patients with ME (as per Ramsay) and never had in over 25 years of this disease. We are different populations. Emotional lability was the term Ramsay used. Not a major feature though.

If the survey is to compare XMRV+ to Canadian criteria then you may have a point. I'm not aware that this was the point of the survey.

If they are so "frequent" then why has no XMRV + person mentioned them as important or relevant?

Hi UKXMRV

Kim's original thread started :

" On another thread, members have been creating a BIG survey. We will eventually have 3 versions: one for those who tested positive for XMRV, one for those who tested negative, and one for those who haven't been tested.

Currently, we have compiled a draft version of the XMRV POSITIVE SURVEY that needs everyone's eyes to look it over. You can leave comments in the text boxes at the bottom of the questions (Other symptoms, etc), or you can also leave comments on the last page."

As I understand the construction of the XMRV+ survey Kim compiled a list of symptoms typical of all contributors to this forum and then asked XMRV+ posters to suggest additional symptoms that they may have missed. There are numerous posters on the forum who have experienced anxiety or depression to an extent and they are included in the Canadian clinical defination, a definition which I thought most considered the most representative to date.

Unless you wish to infer that XMRV+ is a different disease to everyone else's ME/CFS which would be illogical given that the WPI research is seeking to identify XMRV as a cause of ME/CFS not to describe an XMRV disease.
If this is the case so be it.

I just thought that a survey compiled by ME/CFS patients rather than by doctors or psychiatrists who think they know the symptoms would be a very valuable resource and onesurvey used by all would allow you to compare and contrast those tested, not tested, postive, negative etc. With the caveat of course that the test has yet to be fully validated and we can infer nothing about the XMRV status of those not tested.

I don't know whether or not I fit the Canadian criteria. My diagnosis was by the UK exclusion and bugger off method. I may or may not be XMRV positive if tested. I also don't see how you can infer that an XMRV positive test result means that you meet the requirements of ME Ramsey. Unless XMRV was identified as the causative agent at the Royal Free?

Until XMRV is identified as the causal agent in organic ME and a fully reliable and validated test available, its a little too early to be talking about different populations.

PS - I can think of a few reasons why those testing XMRV+ haven't mentioned 'mood disorders'.

 

[ukxmrv]

And what would those reasons be Marco, ? I genuinely didn't think of "mood disorders" when I filled out the survey. I even went back and found a list of symptoms that I wrote for my doctor a few years ago and then checked the survey to see if I had included them.

Did loads of work on myself over the years both physically and mentally. Not frightened by psychological issues. No sign of mood disorders on my medical records even those written by the psychiatric profession.

How do you know what we XMRV+ are feeling, have experienced etc?

Are you psychic by some chance?

XMRV+

 

[Marco]

And what would those reasons be Marco, ? I genuinely didn't think of "mood disorders" when I filled out the survey. I even went back and found a list of symptoms that I wrote for my doctor a few years ago and then checked the survey to see if I had included them.

Did loads of work on myself over the years both physically and mentally. Not frightened by psychological issues. No sign of mood disorders on my medical records even those written by the psychiatric profession.

How do you know what we XMRV+ are feeling, have experienced etc?

Are you psychic by some chance?

XMRV+

There you go again. Trying to set up some sort of demaraction line between those who have taken a test and those who haven't. The term 'we XMRV+ ' is meaningless in the context that XMRV hasn't been proven to cause anything and the fact that the vast majority of us haven't as yet taken the test.

Anxiety and depression are well documented symptoms in CFS, which of course will include some people with primarily psychological problems, but also not surprising with a chronic illness that ruins lives. If you don't have these symptoms don't tick the box, but to leave them out because they may be misinterpreted is just bad science.

It also sets a dangerous precedent. Imagine if the results of this survey are picked up and replicated to the extent that anxiety, depression or 'emotional lability' are considered to be not present in XMRV/XAND or whatever you are trying to describe. Short step from these symptoms not being recorded (because they weren't asked) to them being used as exclusionary factors and suggestive of an alternative diagnosis.

I find it strange, in the context of found brain lesions, spinal chord and brain inflammation and other neuroendocrine abnormalities, that we can happily accept that brain fog, aphasia, memory loss etc can result but not depression or anxiety states. I'd be astounded if these symptoms were NOT experienced with many patients.

You also seem to more comfortable with the notion of Ramsey ME than any other group and state that anxiety or depression were not recorded in Ramsey organic ME. Emotional lability is a term coined or at least appropriated by the psychologist Hans Eysenk (he of the introversion/extroversion scale amongst others) to describe a group of patients who demonstrated inappropriately strong emotional reactions to fairly innocuous situations. He suggested this was a result of having a 'labile autonomous nervous system' or to put it rather crudely, they were predisposed to not being able to cope very well. Fertile ground for psychiatrists I'm sure you would agree, but also what you might expect to find in a serious neurological disease.

If you are more comfortable with a diagnosis that includes 'emotional lability', thats fine. I'd rather stick one that allows for occasional co-morbid depression and anxiety.

You also seem to know a lot about me and my symptoms despite the fact I have never fully discussed them here. Are you psychic? or just making assumptions on the basis that I haven't taken the XMRV test?

 

[ukxmrv]

There is no reason why XMRV + people cannot add "emotional liability" or "depression" or "anxiety" to the list of symptoms if the need is there.

To accuse patients of deliberately missing out that symptom is unfair. To accuse me or XMRV+ of having some sort of agenda in missing out that type of symptom when I don't actually suffer from it is also unfair.

People are free to add what ever they like to the boxes with the questions and that is the right and proper thing to do. I can't determine that and I want to see an honest result.

If you are XMRV+ you will have a chance like everyone else to complete the survey and add to it.

I do hope that people who are not XMRV+ and who do have an agenda act honestly now. We could have the survey hijacked by people pretending to be XMRV+ and who want this to look like more of a psychological illness. Who knows that people will do.

You are insinuating that I am acting dishonestly and have some agenda to disregard symptoms. That is a very serious thing to insinuate and puts the survey into threat (by insinuating that people like myself will lie about their symptoms)

 

[Marco]

There is no reason why XMRV + people cannot add "emotional liability" or "depression" or "anxiety" to the list of symptoms if the need is there.

To accuse patients of deliberately missing out that symptom is unfair. To accuse me or XMRV+ of having some sort of agenda in missing out that type of symptom when I don't actually suffer from it is also unfair.

People are free to add what ever they like to the boxes with the questions and that is the right and proper thing to do. I can't determine that and I want to see an honest result.

If you are XMRV+ you will have a chance like everyone else to complete the survey and add to it.

I do hope that people who are not XMRV+ and who do have an agenda act honestly now. We could have the survey hijacked by people pretending to be XMRV+ and who want this to look like more of a psychological illness. Who knows that people will do.

You are insinuating that I am acting dishonestly and have some agenda to disregard symptoms. That is a very serious thing to insinuate and puts the survey into threat (by insinuating that people like myself will lie about their symptoms)

I'm saying that there is great value to be had in surveying ALL of the people on this forum which could allow for comparisons between those testing positive and negative etc. To do this you need to apply a standard survey instrument to all groups whether diagnosed as ME, CFS, FMS or XMRV plus or minus. Anxiety and depression as symptoms are frequently mentioned in the literature and should, in my opinion, be included to give a full picture. This in no way precludes including a question about XMRV testing which could then be used to filter results. Wouldn't it be an interesting finding if none of the XMRV+ respondents ticked these boxes but others did?

What hacks me off is dismissing me as 'fulfilling some Canadian criteria' but not being XMRV positive. I think your agenda is to distinguish those testing XMRV+ from the basket case CFS cases which is fair enough. I'm pretty sure there are people diagnosed as having ME who have some other problem. I know some personally and would kill to have their lifestyle which bears absolutely no resemblance to mine. Having said that, while I may have lost friends, holidays, most socialising and my career I'm not as severe as Sophia Mirza or Lynn Gilderdale, so I'm not going to be the one to disabuse others of their diagnosis.

But it seems to me that you want to set XMRV+ as some sort of 'super-ME'. I will repeat. I have not been tested and therefore don't know if I'm positive or not and its too early to determine what this means. So I feel perfectly entitled to comment on what I feel would be a valuable research tool and what I see as a wasted opportunity. Thats my agenda and I can assure you that I will not be completing a survey if it doesn't appy to me, but we are fragmented enough as a group and personally I find it insulting that you feel that your illness is different from mine just because you have taken a test.

 

[julius]

UKXMRV,

I'm not really clear on why you are so strongly opposed to including emotional lability/mood disorders.

I think (correct me if I'm wrong) you have a hypothesis that XMRV+'s don't have these issues. That's good, it's step one of the scientific method. But the next step is to test the hypothesis. If you leave it out, you aren't testing the hypothesis.

If you leave it out so that your 'opponents' don't get additional ammo, then that's classic tobacco science. Taking that sort of biased approach would give your opponents tons of ammo. All they have to say is 'it's a biased study'. And they would be right.

If we test the hypothesis, you might find that you are right. Maybe XMRV's don't have emotional problems. That would be great, because it would be an honest and useful result. On the other hand, if XMRV's did demonstrate emotional difficulties, then that would also be great. That too would be an honest and useful result. And we would all learn.

We gain nothing by leaving them out.

 

[_Kim_]

Marco, UKXMRV, and julius,

Advocate and I decided that the survey would not include psychological symptoms. Not because they don't exist for some patients, but because there has already been too great a focus on that in the research arena and far too much mistreatment of patients who have been labeled with psychiatric diagnoses when their symptoms were consistent with an organic illness.

Please keep the comments less personal. Asking if someone is psychic is sarcastic. Address the content of the message, not the messenger.

 

[ukxmrv]

I've spoken with some other XMRV+ and they come from a wide background of illness experiences and diagnoses. All sorts of people.

When the survey is up I'll be encouraging them to join this forum and complete the survey

Thanks to the creators. I hope that we get some useful data from the exercise.

 

[Chris]

Late thought--"psychological symptoms"--sorry!

Hi, Kim and Advocate; I wonder if the omission of psychological symptoms is not a mistake after all. I think the poll was a great idea, and you have done an amazing job bringing it into beingheartfelt thanks and congratulations to you and the others who have worked on it; but when all is said and done, dont we want a complete compendium of what this disease -or diseasesdoes to us, singly and communally?

Are we aiming to correct past errors committed by others? or to record all that this disease has inflicted upon us all? I have now nearly finished reading Oslers Web, and dont need to be reminded of the appalling behaviour and misreadings inflicted during that terrible and still ongoing story; but now and here arent we just trying to make a record, as complete as we can, of what happens when you get infected by this thing?

Depression is a physical symptom, as is anxiety; I have occasionally felt anxious, both before and during my spell with CFS, I have felt confused, angry, despairing, and many other negative things, but virtually never depressed (at least in my own perception or understanding of the word). But yesterday I didI realized that an unfamiliar feeling had overtaken me, and I did not like it. I finally figured out that this was probably depression. I dont know what caused itmaybe my experimenting with adding Isoprine to my ongoing Artesunate, maybe something else altogetherbut something did. I cant think of a psychological trigger or event that might have been responsible for my feeling just that way just yesterday, but what do I know? Something was, and it is not doing it today, thank goodnesssomething somewhere has changed. Were those psychological events only? I doubt it.

Anyway, with or without these terms, the poll should be a great resource for us all, and maybe eventually for others tooa great job!

Congratulations again, Chris.

 

[Lily]

I tend to believe that leaving out anxiety could effect the credibility of the survey, since anxiety is a known neuroendocrine manifestation that's listed in the Canadian Consensus Criteria, as well as a known common occurrence especially during a crash. Anxiety/panic may occur without an external trigger.

If no one happens to have that symtpom, then fine, no one checks that box.

Just my 2 cents.:Retro smile:

 

[_Kim_]

Advocate and I will be adding in all of the wonderful suggestions that everyone has made since the last update to the survey. In order for us to keep track of things, I am going to close this thread.

We will consider all of the points made about anxiety and depression as we revise it.

Thanks for the tremendous support and help that we've gotten in creating this.

Stay tuned.