XMRV Positive? What are your symptoms/medical history?

[Sushi]

Hey Advocate, Dainty and others,

Reading this I just remembered that Cheney said that about half his patients are losing or have completely lost their fingerprints. This is true for me--when I look with a magnifying glass there are only faint traces of fingerprints. I suspect this happens mostly to patients who have been sick for a long time. Cheney even had the police try to fingerprint a few of his patients--Nada! How about this somewhere in the symptom list? Anyone else observed this?

The implications for us are mind boggling! Like who needs disability, we could increase our cash flow more creatively :victory:

Sushi

 

[_Kim_]

Eyes too weak to comb through all 18 pages, so don't know if cause of onset has been mentioned. (Made it through seven, though!)

I would be interested in knowing what triggered people's onset, for example, viral illness, bacterial illness, anaphylaxis, surgery, immunizations, emotional stressors, car accident, etc.

Thanks,
Lucy

New question - #27

I became ill after:

• anaphylaxis
• bacterial illness
• blood transfusion
• car accident
• emotional stressors
• puberty
• surgery
• viral illness
• Other Onset Triggers:

 

[_Kim_]

I would like to apologize if this has been mentioned, but this thread is far to long for me to read.

Has neuropathic pain and paraesthesia (tingling, numbing sensations) been included?

Added a few new categories to question #10

CURRENTLY, my pain includes:
(0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)

• Allodynia (pain due to a stimulus which does not normally provoke pain)
• Arthralgia (joint pain without joint swelling)
• Arthritis
• Bladder pain
• Costochondritis
• Dysesthesias (spontaneous or evoked burning pain, but pain may also be deep and aching)
• General flu-like achiness
• Headaches
• Hip or pelvic pain
• Hyperpathia (particularly unpleasant, exaggerated pain response)
• Low back pain
• Lymph node tenderness (cervical,axillary, or inguinal)
• Migraines
• Migratory pain
• Painful menstruation
• Painful urination
• Paraesthesia (tingling, prickling, pins and needles, electrical-type buzzing, burning, skin crawling, itching, partial numbness)
• Right flank pain (liver, gallbladder)
• Sore throat
• TMJ pain (Temporo-mandibular joint pain)
• Trigeminal neuralgia (facial pain)
• Upper back,shoulder or neck pain
• Other pain

 

[_Kim_]

Sounds good.

Oh and I have a suggestion for a symptom question. We should ask about crimson crescents:
http://www.immunesupport.com/93sum007.htm

Added it to the misc. question:

CURRENTLY, I experience:
(0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)


Crimson crescents (red/purple marks, adjacent to the back molars)
Daytime urinary frequency
Eyes: Blurry vision
Eyes: Droopy eyelids
Eyes: Dry and itchyEyes: Watery
Fatigue that is incapacitating and unrelieved by sleep
Fluctuations in energy throughout the day
Hives
Inability to exercise aerobically
Inability to exercise anaerobically (eg. weight lifting)
Skin rashes
Uncoordinated eating (bite my cheek, my lip, or bash my teeth together)
Urgency to lie down especially when standing still
Wasting
Weakness
Weight gain
Weight loss
Worsening of symptoms after an additional/transient infection (cold, flu, or other)
Worsening of symptoms under increased stress (physical or emotional)

 

[_Kim_]

Kim, this is AMAZING.
You are such an asset to this forum. Thank you.

Do we need to add in having a virus as one of the trigger options?
Can we add in "Post-viral Fatigue Syndrome" as one of the diagnoses? (My neurologist gave me that as a tentative diagnosis.)
Finally a suggestion for one of the symptoms would be 'cold extremities' - I think this is related to POTS and is called Raynaud's phenomenon?

Rachel xx

Raynaud's is in there.

I added this:

I have been diagnosed with:

Amenorrhea (abnormal suppression or absence of menstruation)
Autism
CFIDS (chronic fatigue and immune dysfunction syndrome)
CFS (Chronic Fatigue Syndrome)
Cancer
Candidiasis
Celiac disease
Dementia
Diabetes
Ehler's Danlos Syndrome
Endometriosis
FMS (Fibromyalgia Syndrome)
Hashimotos thyroiditis
Heart disease
Hypoglycemia Interstitial cystitis
Lyme disease
ME (Myalgic Encephalomyelitis)
MS (Multiple Sclerosis)
Multiple chemical sensitivity
Orthostatic intolerance/POTS/NMH
Post-viral Fatigue Syndrome
Primary immune deficiency disease
Raynaud's phenomenon
Recurring fungal infections (eg. Athlete's foot)
Restless leg syndrome
Rheumatoid arthritis
Other diagnoses

 

[_Kim_]

I don't know how this thread got on the topic of functional scales, but since it is, I thought I'd add that it's important (IMHO) to consider cognitive as well as physical abililities. If this has already been mentioned, my apologies. There is no way I can read all the posts in this thread.

Anyway, here's an example of two scales, one for physical function and one for cognitive:

http://www.hfme.org/themeabilityscale.htm

Dr. Yes, you'll see that these scales specifically break down Bell's scale into subcategories for the severely affected. You may find them useful.

ETA: Oops! Never mind, I found the survey you all are working on. And it covers the cognitive problems very nicely. Good job! Well, I was only able to skim, but what I saw looked good!:tongue:

marie, thanks for that link. I've included the entire 3-part Ability Scale from hfme.org as pages 5, 6, and 7 of the survey

 

[gracenote]

What about in addition to "I have been diagnosed with . . ." you add "I am self-diagnosed with . . ." or "I think I also have . . ." My thinking is that many have not been able to get to expert ME/CFS doctors and yet are very aware of symptoms and what they would probably be diagnosed with. This might give a more thorough picture, though less "accurate."

Also, I like the idea of having the XMRV positives AND the negatives and unknowns all take the survey. That way we can see how the groups compare.

 

[leaves]

What about in addition to "I have been diagnosed with . . ." you add "I am self-diagnosed with . . ." or "I think I also have . . ." My thinking is that many have not been able to get to expert ME/CFS doctors and yet are very aware of symptoms and what they would probably be diagnosed with. This might give a more thorough picture, though less "accurate."

Also, I like the idea of having the XMRV positives AND the negatives and unknowns all take the survey. That way we can see how the groups compare.

Yeah I like the idea of including self diagnosis. Also, For me celiac has been ruled out but blood test do indicate intolerance, maybe good to point out that only celiac is meant. A while back the no sweating was suggested, I have that too although before I had excessive sweating, so that changed over time.
*checking my finger prints....*. Yep still there
I guess I have to postpone my criminal career a bit

 

[_Kim_]

As I was updating the survey, I got a big AHA. This survey is for anyone who tested positive. That would include those who are asymptomatic (4% of the healthy controls, family members that were tested, etc).

All of the wording in the survey assumes that the survey taker is sick. They may not be.

 

[leaves]

As I was updating the survey, I got a big AHA. This survey is for anyone who tested positive. That would include those who are asymptomatic (4% of the healthy controls, family members that were tested, etc).

All of the wording in the survey assumes that the survey taker is sick. They may not be.

Yeah that's right!!!
We want them to take it too I guess but it would be good to be able to differientate the results wrt cfs and non cfs people. Maybe add a question like, I have had or have cfs like symptoms. Then we could see whether mean responses vary for these different populations.
It would also be cool to compare the results with a healthy group that does not have xmrv in the family ( I.e likely to test negative) then we can see how common these symptoms are in the general healthy population.

 

[Advocate]

In "CURRENTLY, I experience:", someone asked to have this sentence broken into two:

Fatigue that is incapacitating and unrelieved by sleep

Fatigue that is incapacitating
Fatigue that is unrelieved by sleep
Fatigue that is made worse by exercise or over-exertion

 

[Lily]

What about in addition to "I have been diagnosed with . . ." you add "I am self-diagnosed with . . ." or "I think I also have . . ." My thinking is that many have not been able to get to expert ME/CFS doctors and yet are very aware of symptoms and what they would probably be diagnosed with. This might give a more thorough picture, though less "accurate."

Also, I like the idea of having the XMRV positives AND the negatives and unknowns all take the survey. That way we can see how the groups compare.

I think it will be interesting to see the testing that has been done (or not):Retro wink: in those who have been diagnosed by a doctor. There may also be a significant amount who have had a lot of testing (other than the basic), but still do not have a diagnosis. I think I'd be willing to bet (if enough people take the survey) we will see many who have been diagnosed without much, if any, of testing that has been done with those who have been treated/evaluated by the handful of known CFS specialists.

Whether or not you limit the survey to those who have a CFS diagnosis from a "doctor" :Retro tongue:, it would be good to ask the specialty and type of doc (MD, DO, ND), who made the diagnosis. What about also listing the known CFS docs so that we can see how many have seen one of the big CFS specialists? I'm just thinking off the top of my head now.......I know there has to be an end to the questions sometime......

Incidentially, I tried taking the survey twice now. The first time I got tired really fast and realized I should have tried it earlier in the day. I think I finished it, but just sort of marked things willynilly to get done. The second time I started when I felt less tired and went more slowly - I had a very difficult time staying on the right line....I'd find I was checking the answer on the question below the line I was actually on and constantly have to go back and redo. The back and forth eye movements from the question/symptom to clicking the appropriate level of severity made me nauseous quickly and I didn't finish it.

That of course is no fault of the survey. It's great and I love it. I'm just pointing out how the disease is effecting my ability to do it. I know that when you go live with it, you're hoping that participants will be able to complete it in stages if necessary. I'm not worried about whether I can do it, because it doesn't matter, but I am kind of interested in knowing how many could do it in one sitting, or how difficult it was. (I know - is there NO END to what I think would be interesting information????? )

Most important is the analysis and comparison of the results in the positives vs negatives, but I'm also interested in the remainder too. I would have loved to have been able to help, especially in the analyses and reporting. Just another part of the old me that I miss. You all have done such a wonderful job with this. I think there are several different types of documents that could come from this.

YOU GUYS AND GALS REALLY ROCK!!!:victory:

 

[_Kim_]

In "CURRENTLY, I experience:", someone asked to have this sentence broken into two:

Fatigue that is incapacitating
Fatigue that is unrelieved by sleep
Fatigue that is made worse by exercise or over-exertion

I reorganized the survey to put the demographic questions on page 1 and 2. If someone taking the survey is healthy, they can just bypass pages 3-5 by clicking [Next Page].

Latest version of the Survey (under construction :Retro wink

I added in the Fatigue suggestions:

15. CURRENTLY, I experience:
(0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)


Crimson crescents (red/purple marks, adjacent to the back molars)
Daytime urinary frequency
Eyes: Blurry vision
Eyes: Droopy eyelids
Eyes: Dry and itchy
Eyes: Watery
Fatigue that is incapacitating
Fatigue that is made worse by exercise or over-exertion
Fatigue that is unrelieved by sleepFluctuations in energy throughout the day
Hives
Inability to exercise aerobically
Inability to exercise anaerobically (eg. weight lifting)
Skin rashes
Uncoordinated eating (bite my cheek, my lip, or bash my teeth together)
Urgency to lie down especially when standing still
Wasting
Weakness
Weight gain
Weight loss
Worsening of symptoms after an additional/transient infection (cold, flu, or other)
Worsening of symptoms under increased stress (physical or emotional)

 

[leaves]

I was also thinking; what about the false negatives?
I guess we will keep this questionaire up for a long time, so if false negatives get retested later, can they then go back to the questionaire and change their answer to xmrv+?

 

[_Kim_]

I reorganized the survey to put the demographic questions on page 1 and 2. If someone taking the survey is healthy, they can just bypass pages 3-5 by clicking [Next Page].

Latest version of the Survey (under construction :Retro wink

I added in the Fatigue suggestions:

15. CURRENTLY, I experience:
(0=no symptoms, 5=severe symptoms, Past=if you've had this symptom in the past, but don't have it currently)


Crimson crescents (red/purple marks, adjacent to the back molars)
Daytime urinary frequency
Eyes: Blurry vision
Eyes: Droopy eyelids
Eyes: Dry and itchy
Eyes: Watery
Fatigue that is incapacitating
Fatigue that is made worse by exercise or over-exertion
Fatigue that is unrelieved by sleepFluctuations in energy throughout the day
Hives
Inability to exercise aerobically
Inability to exercise anaerobically (eg. weight lifting)
Skin rashes
Uncoordinated eating (bite my cheek, my lip, or bash my teeth together)
Urgency to lie down especially when standing still
Wasting
Weakness
Weight gain
Weight loss
Worsening of symptoms after an additional/transient infection (cold, flu, or other)
Worsening of symptoms under increased stress (physical or emotional)

ETA: I am only up to page 20 on this thread in regard to incorporating your suggestions. Hang in there.

 

[_Kim_]

I think we need to ask age of onset or the answers to the educational level question could be misleading

Question about educational level:

At what age did you become ill?

What is your level of educational attainment: (1) GCSE (U.S. equivalent) (2) A level (U.S equivalent (3) degree (4) post-graduate degree.

I'm leaving out educational attainment for now. The US and European equivalents are too messy for me to write that out. If anyone else wants to formulate this as a question, go for it.

I added the age of onset.

I am still concerned about the PAST questions. We cannot add more columns, I guess, but perhaps it could be refined by asking another question about the trend of symptoms to improve/worsen.

For example: Have your immune/neurological/digestive/sensitivities/sleep/cogntive/cardiac problems worsened, improved or stayed the same over the course of the illness? This may help to tease out the nature of the evolution of the illness over time and possible stages.

How does this work as a new question?

1.
Have these aspects of your illness changed over time?

Choose:
[Have remained constant] [Are somewhat worse] [Are severely worse] [Are somewhat improved] [Have completely resolved]

• Cognitive symptoms
• Autonomic Nervous System symptoms
• Gastrointestinal symptoms
• Sleep problems
• Pain
• Allergies, intolerances and/or sensitivities
• Sensory hypersensitivities
• Cardiac symptoms
• Sexual dysfunction

Also would it be helpful to say what time frame 'current' refers to' ? Given that the symptoms of this illness fluctuate, I think we do need to qualify the words 'current' and 'past' For example, up to very recently, I experienced severe breathlessness, but it has resolved itself, for the moment, since Christmas. It could re-occur at any time. So is this current or past? So many of our problems are cyclical, so I think we do need to define 'current' eg. Has it been a regular or prominent symptom in the last year?

Maybe there should be a first question, that really isn't a question, but a welcome paragraph and a how-to-take-the-survey message.

This is where we could let them know that they can take their time - do a portion of the survey, then come back later to finish it.

And where we could describe what terms like 'Current' and 'Past' mean.

Would it be possible to be able to tick both current and past boxes? That way it would be possible to see whether a symptom is new. It would again give an indication of the evolution of the symptoms and whether the condition could be divided into stages.

Right now, I have the survey enabled so that you can tick both current and past boxes. I don't intend to keep it that way for the LIVE version. It would be too easy, then, for people to make a mistake and entering 2 or more values unintentionally for the same question. For that reason, I will make all of those types of questions so that only one answer per row is accepted.

For Q.25 could rheumatoid arthritis be added? There have been suggestions that this could be caued by a retrovirus? Also hyper-reflexia because of its association with M.E. Dementia was also mentioned by Dr Bateman - I guess we can all tick that box to some level.

RA and hyperreflexia were added.

There is another thought. Some of us have spent years with very low BP and POTS, but some have now developed high BP. This may be our genes kicking in, but it would be interesting to see how many of us have developed hypertension. Cheney said no more than 2%. Could we check that? eg. for 29 years I have had very low BP down to 60/40. Now, during the last months, it has rocketed to nearly230/120. So a hypertensive question somewhere, perhaps.....what do you think?

Hypertension was added to the cardiac symptoms.

I have drawn up a poll to test for transmission between genetic and non-genetic household members. After looking at the questions in the survey, I would just like to suggest a couple of things. Could there be a column added for non-related (non-spouse) household members? I have in mind au pairs, lodgers etc. I know of some who have developed the illness when staying in a home where one person has the condition. It might be useful to know. The time frame would be helpful, but it is getting rather long. Also, one thing that I believe is important, so that the results do not become scewed, is to ask the question 'Do you live alone?'

Added non-related household members (lodgers, au pairs) to the columns

One more, what about family pets who have developed the illness? My vet told me that my dog, she was sure, had developed M.E. from me. It was triggered by a vaccination - her third booster. I have since heard a documentary which claimed that a number of dogs develop such an illness after their third (and unnecessary) booster vaccination.

I didn't include a pet question. Does anyone else feel strongly that this should be included?

Another stray thought...a number of us who were brought up in the 50s had contact with polio. I developed it in 1955 and suffered from muscle weakness ever after, although the paralysis was only temporary. This could be quite important to ask the over-50s if they had exposure to polio because of the similarities to post-polio syndrome.

Phew! Sorry about the looong block of print :tear:

Added Post-polio syndrome to the 'Other diagnoses' question.

 

[_Kim_]

Maybe there should be a first question, that really isn't a question, but a welcome paragraph and a how-to-take-the-survey message.

This is where we could let them know that they can take their time - do a portion of the survey, then come back later to finish it.

And where we could describe what terms like 'Current' and 'Past' mean.

I need some help with this one. I just stuck a temporary question #1 up there. I need help writing a Welcome paragraph. Something about testing XMRV positive, etc.

1.
Welcome paragraph

How to Take the Survey (in parts)
Current and Past defined

Invitation to join Phoenix Rising forums.


They will check off: I agree to participate blah blah blah.

 

[fds66]

I am doing the test survey and I still have a problem with the question about remission. The only time that my symptoms have lifted at all were during pregnancy and never at any other time. That doesn't seem the same to me as a remission for other reasons. Or maybe there are lots of reasons for remissions (would love to know what they are because I'd love a remission). Also after all the discussion on hormones and progesterone on another thread are there any questions about hormonal issues that could be asked? There seems to be a divide between people helped and made worse by progesterone - whether that is pregnancy, the pill or other forms of progesterone.

 

[fds66]

Also, the list of symptoms is so long I lose the heading so I lose track of what each column means. Not sure there's anything you can do about that - might just be me easily confused.

What does auditory processing dysfunction mean?

 

[_Kim_]

Hi Coxy,

Your question made me think of another. Maybe we should ask people to indicate if they are completing the survey for themselves or for a child or dependent or someone who is unable to do so without assistance.

Question #2 now is:

2.
I am completing this survey:

For myself
For a child under the age of 18
For someone who needs assistance