Katrina Berne's CFS/FM Symptom Checklist - still one of my fav assessment tools

[Stuart]

http://www.wpinstitute.org/patient/docs/c1-berne.pdf

Katrina Berne, Ph.D.
CFS/FM Symptom Checklist
A comprehensive list of symptoms commonly experienced by those with diagnosed with
Chronic Fatigue Syndrome and/or Fibromyalgia. Symptoms may be rated on a scale to
indicate intensity. This form is a useful inventory when completed several times a year
to monitor changes in symptoms. Copies of the completed checklists may be given to
your physician to be included in your medical file.

At one phase or another I have had nearly every symptom on the list to some degree.  The ME (cfs) plus FM complex has several studies showing the combination is synergistic and makes the degree of symptoms much worse that either disease alone.

[Gerwyn]

http://www.wpinstitute.org/patient/docs/c1-berne.pdf




At one phase or another I have had nearly every symptom on the list to some degree.  The ME (cfs) plus FM complex has several studies showing the combination is synergistic and makes the degree of symptoms much worse that either disease alone.

you can certainly say that again!

[Phyfe]

This is a great tool!  I will take it to my next Dr Visit.  Thank you so much for providing the link!

[Tiabuf]

good idea for taking it to my GP & might even give it to my Step Dad - you never know perhaps the penny will drop - I live in HOPE 

[Superjump]

I've always found the question about 'Inability to enjoy previously enjoyed activities' a difficult one, when filed under mood or in a psych evaluation.

I once documented to another M.E group about how the questionnaires I was ask to fill in could paint a misleading picture of patient health, and provide favourable statistics to those who set out with a psych agenda.

Several of the questions that hinted at not being able to do or enjoy certain things overlapped with the same sort of answer you might give based on physical health.

Obviously I'm not denying that there is a symptomatic depression that goes along with M.E (I would personally describe it as a perpetual bereavement), but my answer to such questions is much more measured than a yes/no response.

Take for instance, do I have the ability to enjoy playing a game of soccer? From a mental perspective, absolutely. If I was able to get up and run about and suffer no ill effects, well, I might actually faint from the relief and endorphins. Of course, if I answer that question in a positive way, it could be used to perceive some inaccuracy in my statements about my physical symptoms too.

It just seems like something that can be used against you from both sides. Some of the forms from the NHS date back to early 80s as well, it's not hugely inspiring stuff.

Anyway I digress, it is a good list, it's just that one question often bugs me.

[Jaz]

Thanks Stuart, that's the best symptom list I've ever seen.  It certainly addresses many issues that most other ME or FMS symptom lists fail to note.  There's a place for comments below so that's where you could write in "light flickering" which I get at times too, Forbin, or where you could explain why you no longer enjoy previous activities, Superjump.  Like in my case, I can't enjoy things I once did due to excruciating pain, illness and an inability to deal with raising my heart rate.

Since I've developed severe fibro, my ME has also gotten much worse and they do act synergistically making my suffering much, much worse than I ever would have imagined anyone can endure.  This fact is important to point out to doctors. 

This list of symptoms is exactly what people should be submitting to their doctors for disability purposes and even once you obtain disability.  It's good to bring in a checklist of symptoms to your doctors now and then just so they can keep on top of your situation.  You don't have to read it to them, they like when you hand them their own copy and tell them they can keep it.

[Mithriel]

It doesn't include the exacerbation of symptoms by exercise which is the cardinal symptom of ME. If you do not have that you do not have ME.

This is also called post exertional malaise but that is not a very good term. It is not just a fatigue that gets worse with exercise,  for instance, if I walked too far I did not get fatigue but I couldn't remember how to get home. Physical exertion leading to cognitive problems and vice versa is common in ME and helps distinguish it from chronic fatigue.

The payback from exercise can be delayed, often for three days and that and the PEM should be at the head of any list.

Also, ME does not require fatigue at all just worsening with exercise, neither does it require the 50% reduction in ability. Some people can do almost as much as usual but get the abnormal response to exercise so have ME even if they do not meet the diagnosis of CFS.

(The six month of symptoms in the usual definition of CFS is not required either. You get ME on the first day and you have it for life.)

I do not think the list is that bad, many of the other symptoms are there and I have always respected Katerina Berne since I bought her book years ago. I suspect it was written when the US did not know enough about ME, especially the link with exercise. As we have all pooled our knowledge and the internet has made UK research available to US patients, we have reached a greater understanding.

The link with fibromyalgia was also made in the US and I wondered at the time if it was because the terrible pain of ME was not reflected in the CDC'S CFS definition. While some people may actually have the two diseases I suspect a lot simply have ME but doctors nowadays are ignorant of the exactly what ME was. (It is important, because gentle exercise helps FM but will make the pain of ME worse). The neurologist who diagnosed me had been at the Royal Free and he said that patients screamed with the pain as they were being examined.

The long list of symptoms of ME needs to be understood by the medical profession, but it is very helpful to see your own problems written down and understand that there is a pattern if anyone would look.

Mithriel

[Stuart]

Um, yes it does, first page under General, first line item:

Fatigue, made worse by physical exertion or stress ___
 
 

[jace]

But it's not 'fatigue' it's a global, delayed worsening of symptoms Stuart. Everyone gets tired if they exercise beyond a certain point, but they don't get worse cognition, removal of ability to move, need to exclude external stimuli, increased pain etc.

 

This is also called post exertional malaise but that is not a very good term. It is not just a fatigue that gets worse with exercise,  for instance, if I walked too far I did not get fatigue but I couldn't remember how to get home. Physical exertion leading to cognitive problems and vice versa is common in ME and helps distinguish it from chronic fatigue.

The payback from exercise can be delayed, often for three days and that and the PEM should be at the head of any list.

[Phyfe]

Well then, could we update the checklist without breaking any copyright laws?  Maybe we add those few things to it!!!

[Wildaisy]

Phyfe, I think this is a great idea.  If we get a good list, it would be nice to put it in the forum Wiki, where it can be changed as needed and available to everyone.

As long as we are using the link to their website and not copying the materials, we are not violating their copyright.  If we can't make our changes without copying their list then maybe we should just start our own list.

My suggestion is if we want to use the list itself, it might be a good idea to write to Katrina Berne or whoever owns the copyright and ask if we can use it for what we are planning.  Often, a copyright owner will allow the use as long as credit is given.

However we do it, I think such a list is a good idea.

[Mithriel]

It is a great idea to take the best from these older lists and refine them with our new knowledge.

We have learned so much from each other about what our illness really means since the XMRV announcement got so many of us together.

They can no longer say that it is a random set of symptoms. All of them will have to be accounted for in any theory, not just "fatigue".

A proper description of our disease could be our biggest step forward so this is an important thread.

Mithriel

[Stuart]

Yes, I am more than aware of that, in fact you go back on threads, maybe on the forum that must not be named, and I was the one who initiated new name suggestions saying 'fatigue' and 'PEM' especially 'post-exertional maliase' were lame names for it.
 
I suggested something on the order of post exertional (physical, mental, ect.) morbidity.  I think Chris Cairns did a recent post with a twist on this rephrasing of 'PEM', I forget his phrasing.
 
Been there done that, stop assuming.

[Wildaisy]

I wrote to Katrina Berne and she gave her permission for her checklists to be posted.  They are now posted in the forum Wiki here:

http://www.mecfsforums.com/wiki/Symptoms

The first is her full symptom checklist, and the second list is most important symptoms, a short list.

[Jackie]

excellent, thanks stuart. (forbin mentioned flickering vision - as in "strobing" - one of my problems) also, the first time i've noticed "frequent sighing" as a symptom. accurate.


guido