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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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XMRV Positive? What are your symptoms/medical history?

Advocate

Senior Member
Messages
529
Location
U.S.A.
I believe we could also integrate it to the vbulletin forum user database so that we can prevent people from taking it multiple times and have people take it again after a period of time and compare it with the earlier results.

If we get at least a few hundred people the data could be analyzed with various statistical methods.

Hi CFS Since 1998,

Do you know if the quicksurveys form that we are currently using to build a survey does allow people to complete the survey multiple times? I've wondered about that.

Would the quicksurveys form enable someone to analyze the data easily?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Hey Katie,

In fact, I was thinking last night that a question about Ehlers-Danlos might be good


Sushi, this is a good idea. A doctor who specialises in M.E. has just told me about this connection, and she has also said that I have the common form of it. (My party trick was to wind my foot round my neck .....pre-arthritis that is.)It would be interesting to see how frequently it correlated with M.E. or U.S. CFS.
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
I don't know if I am the only one who has tested positive using Drs. Klinghardt and Cowden's method, but I may be!

Sushi

Hi Sushi,

I'm behind on this string, so forgive me if you've already answered this, but is there a name for their method that we could use in the survey? (And just curious: how does the method work?)
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Sure, if you want to write that question up, go for it.

Hi Kim
I haven't been able to use my computer during the day, and it's too late for me now, so will get back to this tomorrow morning. By that time, given the current rate of progress, it'll probably be done and dusted. It's a great piece of work. Well done everyone. :Sign Good Job:

I just have to :In bed:

See you tomorrow. :Retro smile:
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Advocate,

They call it Direct Resonance Testing. See post 110 on pg 8 of this thread for a description.

Thanks!
Sushi
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
Hey Kim,

(Btw, I've always had a problem with the activity scales, even the Bell scale, for the bottom end of the activity spectrum. Seems like there should be one more category between the lowest and second lowest, i.e. not entirely bedridden but still unable to take care of self in most respects. Minor point, I guess..)

Hi Dr. Yes,

No, it's not a minor point! I think Dr. Bell's scale is the best one out there, but it's still not perfect, especially at the bottom end. There might be a way to solve this--such as inserting a 5 between the 0 and 10 (with apologies to Dr. Bell)--but want to think about it some more. Do you have any suggestions?
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
But we're becoming an educated bunch of sickies. With all the info and expertise we bring together, my guess is that this survey is the most up-to-date piece of literature and compiles all know research and diagnostic tools. There aren't that many specialists out there that know as much as our combined super-network brain.

Nicely said. We've all taken surveys that have disappointed us. Our group effort will surely produce an excellent survey.
 

mezombie

Senior Member
Messages
324
Location
East Coast city, USA
Dr. Yes & others: another useful functional scale

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.:ashamed: And it covers the cognitive problems very nicely. Good job! Well, I was only able to skim, but what I saw looked good!:tongue:
 
C

Cloud

Guest
I think "trigger" would be important too.

Also, regarding the posts on preventing multiple surveys from one person......Why would anyone do that?
 
T

thefreeprisoner

Guest
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
 
K

_Kim_

Guest
Hi CFS Since 1998,

Do you know if the quicksurveys form that we are currently using to build a survey does allow people to complete the survey multiple times? I've wondered about that.

Would the quicksurveys form enable someone to analyze the data easily?

The kwiksurveys allows the survey maker to import the data into Excel, but since we have no responses up there, I can't tell how well it's working or not. I don't think it's very sophisticated.

Here are the options when you set up the survey.

Allow Participants to:

Take survey once
Take survey once and return to edit survey
Take survey many times

I set it up so we can edit it - I know how our brains work. We need an edit option, I think.
 
K

_Kim_

Guest
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.:ashamed: And it covers the cognitive problems very nicely. Good job! Well, I was only able to skim, but what I saw looked good!:tongue:

Thanks marie,

I think you may have given us the solution to the Disability Scale issue. There are actually 3 Scales on The Hummingbird site - Physical ability, Cognitive ability, and Symptom severity. It looks like we can use the text verbatim.

Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration. Please redistribute this text widely.
Any thoughts?
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
how about a section for;

Treatments I have found useful/effective

maybe they can just type their answer, because a list of the possible treatments would be long.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Hi Kim and everyone,

After working through the survey again I have the following suggestions.

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 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.

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?



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.



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.



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?



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?'


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.



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! :thumbsup::hug: Sorry about the looong block of print:eek: :tear:
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Countrygirl;37466]Why has my post laid out as above???? Did I do something wrong?

C.G.:ashamed::ashamed::worried:

Huh??? :confused: :eek: :worried: It's changed again and I'm replying to myself. :worried::eek: Is someone tickering with the nuts and bolts???
 

coxy

Senior Member
Messages
174
what about younger children who've developed ME/CFS, mine were both only 8yrs old, to young for gcse, A levels etcQUOTE=Countrygirl;37465]Hi Kim and everyone,

After working through the survey again I have the following suggestions.

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 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.

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?



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.



For Q.25 could rheumatoid arthritis be added? There has 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.



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?



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. I might be useful to know. the time frame would be useful, 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?'


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.



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! :thumbsup::hug: Sorry about the looong block of print:eek: :tear:[/QUOTE]