ME/CFS Community Profile Page

[Cort]

Introduction - This project is also an opportunity to gather alot of information on the ME/CFS Community. All the data in gathered in this section would be aggregated to provide a snapshot of the ME/CFS Community; no individual data would be available. Its an opportunity to make the world acquainted with the state of the CFS community.

The question is what types of data should be gathered and which types of data displayed? Some ideas are below.

Basic Patient Info

• Age - percent found in various age ranges
• Gender
• Duration of illness - >1 year, 1-5 yrs, 5-10, 10-20, >20?
• Activity level - Bells Disability Scale
• Type of onset - acute without warning, acute preceded by reduced health, gradual
• Diagnostic Criteria Met (Fukuda, CCC, new IACFS/ME)
• Co-occurring Conditions - list
• Family History - list top medical conditions in immediate family (by category?
• Parents with Children - % of parents whose child has a diagnosis of ME/CFS

Work and Financial Status
• Work status (part-time, full time, not working)
• Date last worked for pay (average)
• Education Level
• Disability/Social Services utilized (% using government disability, private disability, other government support???)
• Finances - % government disability /private disability support/family support/no outside support

Health Course and Status

• My health over the past year has…improved, gotten worse, etc.
• Since I came down with CFS my health has……..slowly improved/slowly declined/improved
• Common co-occurring diagnose
• Course --- how to quantify course with the different types of ups and downs patients experience?

Medical Community Satisfaction Section

• Number of doctor's seen
• Type of physician/physicians seen
• Satisfaction with current physician
• Current physicians level of expertise in ME/CFS -
• I am not seeing a physician because.... (finances prevent, no suitable physicians available, tired of wasting my money))

 

[Bethany]

Charting the Course

Cort,

In or along with COURSE, I would suggest you include Crisis Periods, although it may only be relevant to those who have had it many years. For example I've had 2 of those, lasting about 2 years each. It would be good to see if other's have less of them, more of them, longer duration, shorter duration... don't you think?

Also I significantly changed levels immediately after my second crisis... from bedridden to actually able to work a job for the first time, even full time. Then again, my work history includes quick burn-outs and leaving jobs every year or two, out of difficulty maintaining the full time level. Not sure what you would call it, but that would be important information. More than just current work level, is the chart of level, I would think.

Just some thoughts...

 

[Cort]

Good idea. I think the stories of the ups and downs that people experience with this disease are so intriguing. Since I've been, except for ME/CFS, pretty stable - after 5 years or so, not really getting better or worse much, I thought most people were similar. Now, though, I'm really astounded at the many partial or near recoveries people experience - only to have relapse later. I'd love to be able to capture that.

 

[Victoria]

Perhaps hard to capture those ups & downs in long term patients (unless they have kept diaries or like me, have kept every medical bill/receipt for about 16 years & a pain diary for several years).

I can remember so little of the past 30 years - short term memory is appalling. But it's the medical bills that enabled me to do a 32 page spreadsheet over the last couple of months. i was also able to add up the cost - $62,040.57. And that's the cost of the receipts I kept. I know there was at least $15,000 in Chiropractor's bills alone, in the 14 yrs prior to that period.

I used to jokingly say, that health has cost me $80,000-$100,000 in the last 30 years and I learnt recently that I was not far wrong in that estimate.

Yes, it sure does cost alot of money (being chronically ill).

PS I am also very interested in what may trigger relapses (after being well or significantly improved for a few years).

 

[Jenny]

This is a great idea. One of the big challenges though will be to get enough people to participate and to update their details regularly. Everything will depend on getting a large enough data set to be able to draw reliable conclusions.

We see that only a small number of people on this board contribute to the various polls, for example, even though we have nearly 2,000 members. And although there are a lot of people registered on Patients Like Me, a lot don't regularly update their profile.

How can we best encourage people to participate?

Jenny

 

[Victoria]

Perhaps there are members who can't fill in their stats due to being too ill to type, or because their cognitive function is too limited?

 

[Cort]

This is a great idea. One of the big challenges though will be to get enough people to participate and to update their details regularly. Everything will depend on getting a large enough data set to be able to draw reliable conclusions.

We see that only a small number of people on this board contribute to the various polls, for example, even though we have nearly 2,000 members. And although there are a lot of people registered on Patients Like Me, a lot don't regularly update their profile.

How can we best encourage people to participate?

Jenny

Very good questions Jenny. I am stumped at the low poll results. We obviously need to make this as user friendly as possible - really as forum like a possible, if that's possible. The forum is a great tool for communication - how to translate that into a treatment review site?

 

[Cort]

Hi Cort and others,

Fine idea, and the first to attempt to say it with statistics on this site also, I think.

There are some difficulties, as other posters mentioned, which ought to be surmountable but addressed, one of which are these, in itself fairly interesting, topics:

* The differences between social benefits for being ill without work in various countries
* The differences between health insurances and help one may get

These seem to me to be fairly large, which makes comparisons between persons from different nations a bit ... problematic.

Best wishes,

Maarten.

It does get trickier and trickier the deeper you dig into it

 

[caledonia]

This is a great idea. One of the big challenges though will be to get enough people to participate and to update their details regularly. Everything will depend on getting a large enough data set to be able to draw reliable conclusions.

We see that only a small number of people on this board contribute to the various polls, for example, even though we have nearly 2,000 members. And although there are a lot of people registered on Patients Like Me, a lot don't regularly update their profile.

How can we best encourage people to participate?

Jenny

You can send out email blasts to members every so often, like quarterly, to encourage them to fill in their profile/questionnaire.

The polls should perhaps be in a special section by themselves, so they don't get lost in the threads.

The way I generally use the board is to click New Posts and read through any that sound interesting. I think a lot of people do the same.

It might be useful to know how people use the board and then organize the board according to that. I believe there are stats which will show that.

 

[Cort]

Good idea about the Polls. I've thought of that before. Maybe we'll do a poll on it!

 

[Mithriel]

Some suggestions for Basic Information

Basic Patient Info
Duration of illness - >1 year, 1-5 yrs, 5-10, 10-20, >20?

Many of us have been ill a long time and I get annoyed when we are shoehorned into a >20 as it loses some of the sense of time we suffer. Unless it is a problem with space, could we have 20 - 30 30 - 40 and 40 - 50 then >50. I am 42 years.

Type of onset - acute without warning, acute preceded by reduced health, gradual

Would age at onset be a useful measure? It could lead to insights.

Diagnostic Criteria Met (Fukuda, CCC, new IACFS/ME)

I was actually diagnosed by Ramsay's original ME criteria long before CFS was invented so could we add that even if I am the only one :Retro smile:

Co-occurring Conditions - list

Family History - list top medical conditions in immediate family (by category?

Family history is usually by shared genetics, but if we are infective it would be useful to know the health of partners as well.

A good idea, though. We are a powerful resource here.

Mithriel

 

[Cort]

Many of us have been ill a long time and I get annoyed when we are shoehorned into a >20 as it loses some of the sense of time we suffer. Unless it is a problem with space, could we have 20 - 30 30 - 40 and 40 - 50 then >50. I am 42 years.

42 years! Yes we should fine-tune that more.

Would age at onset be a useful measure? It could lead to insights.

Agree - a definite yes on age at onset.

I was actually diagnosed by Ramsay's original ME criteria long before CFS was invented so could we add that even if I am the only one :Retro smile:

An old-schooler

Co-occurring Conditions - list



Family history is usually by shared genetics, but if we are infective it would be useful to know the health of partners as well.

 

[OverTheHills]

Problems with diagnosis

The diagnosis issue is going to be a big one; in UK and NZ, diagnosis is not transparent. The doctor, in god mode, says ME or not ME (but if not ME what is wrong with you). They do not explain which criteria they are using or what symptoms/history/results inform their conclusions.

I have seen the top doctor specialising in ME in NZ(Dr Vallings), a consultant neurologist in London(Professor Findley), the top doctor specialising in UK (Dr Myhill) and a nameless moron of a psychiatrist at the NHS ME service. All of them thought I had ME. None of them talked about which case definition they had in mind.

I believe I fit the CCC despite having very little pain and no OI ( but boy do I have PEM, cognitive, muscle weakness, hypersomnia, inability to control temperature, GI problems, allergies/MCS etc). So I would put myself in a CCC diagnosis category.

Iin short I think doctors quality of diagnosis is so poor its often no better than patient diagnosis. Perhaps we (older hands) will need to help some people who want to participate in classifying themselves as Fukuda or CCC? .

OTH:sofa:

 

[Cort]

You can send out email blasts to members every so often, like quarterly, to encourage them to fill in their profile/questionnaire.

The polls should perhaps be in a special section by themselves, so they don't get lost in the threads.

The way I generally use the board is to click New Posts and read through any that sound interesting. I think a lot of people do the same.

It might be useful to know how people use the board and then organize the board according to that. I believe there are stats which will show that.

THanks Caledonia - we do have a nice email feature here. Your idea sparked someone else and we're trying to see if we can get some advice on how to make this as usable as possible.

 

[Cort]

The diagnosis issue is going to be a big one; in UK and NZ, diagnosis is not transparent. The doctor, in god mode, says ME or not ME (but if not ME what is wrong with you). They do not explain which criteria they are using or what symptoms/history/results inform their conclusions.

I have seen the top doctor specialising in ME in NZ(Dr Vallings), a consultant neurologist in London(Professor Findley), the top doctor specialising in UK (Dr Myhill) and a nameless moron of a psychiatrist at the NHS ME service. All of them thought I had ME. None of them talked about which case definition they had in mind.

I believe I fit the CCC despite having very little pain and no OI ( but boy do I have PEM, cognitive, muscle weakness, hypersomnia, inability to control temperature, GI problems, allergies/MCS etc). So I would put myself in a CCC diagnosis category.

Iin short I think doctors quality of diagnosis is so poor its often no better than patient diagnosis. Perhaps we (older hands) will need to help some people who want to participate in classifying themselves as Fukuda or CCC? .

OTH:sofa:

I think that's a problem everywhere. I think we'll probably have to ask a) have you been diagnosed by a medical doctor with ME/CFS then produce the diagnostic criteria and ask them which ones they fit. Its not perfect....we will have to cut corners in numerous places. The question will be, I think, does cutting corners render the data unusable or is it still valuable?

 

[Victoria]

I'm probably stating the obvious, but after you've done all the brain storming & set this project up, I hope you'll make it open to change & additions.

No matter how hard one tries & how many people offer suggestions, there's always going to be something missed which should be included.

 

[Jenny]

FWIW here's a link to another site which collates and analyses patients' reports of their conditions and treatments.

http://www.traitwise.com/

It looks quite new, so doesn't seem to have much data yet. I haven't spent much time on it, but I found it very confusing - seems to be asking you to insert questions that you want to ask people.

Jenny

 

[jace]

Just a small point -

Work and Financial Status
Work status (part-time, full time, not working)
Date last worked for pay (average)
Education Level
Disability/Social Services utilized (% using government disability, private disability, other government support???)
Finances - % government disability /private disability support/family support/no outside support

Include 'living on retirement pension' - like me, thank the lord

 

[Cort]

Good thanks Jace. (and yes, praise the lord )

I agree Victoria, I hope that this project will continue to evolve and change over time - that would be fantastic.

 

[JT1024]

Jenny,

Traitwise is really interesting. Thanks for the link! I have played around with it a little and it is really amazing. You can even develop your own surveys for your own community.

From the brief questionnaire I took on one condition (FM), it asked whether I had had a vaccine for Hepatitis B. I had never thought about it before now but I was vaccinated as most in healthcare were back in the 80's. Of those responding, 66% had been vaccinated for Hep B. I don't think that vaccination is common among the general public but I could be wrong.

This site needs more investigation! I'll have to go back and take the CFS questionnaire and see how that works out!

Cort, this has potential for some of the functionality in your proposal.

Thanks again Jenny!