Onset

[Cort]

From questionnaires provided by various researchers. Please provide suggestions below the researchers questions - please do not edit researchers questions directly. Thanks

Jason

76. Over what period of time did your fatigue/energy related illness, develop? (Check one)
? Within 24 hours
? Over 1 week
? Over 1 month
? Over 2-6 months
? Over 7-12 months
? Over 1-2 years
? Longer than 2 years
? Had problem with fatigue/energy since childhood or adolescence
? I am not ill

79. Did your fatigue/energy related illness start after you experienced any of the following? (Check one or more and please specify)
? An infectious illness
? An accident
? A trip or vacation
? An immunization (shot at doctors office)
? Surgery
? Severe stress (bad or unhappy event(s))
? Other
? I am not ill
doing exercise

(I suggest for the above question to get rid of the "bad and unhappy event" part after the "Severe Stress" as many get ME/CFS after or during the stress of exams but one cant call them a bad and unhappy event.)

Vernon

Have you been diagnosed with CFS by a physician or other health care provider? _____ Yes _____ No _____Not applicable How old were you when CFS first appeared?

Cort

I had acute onset: I experienced a sudden dramatic decline in my health

My health at the time was:

* Excellent
* good
* fair
* poor

I had not experienced increasing levels of the symptoms associated with ME/CFS in the year prior to becoming ill
I had experienced increasing levels of symptoms associated with ME/CFS in the year prior to coming ill

I had gradual onset: I experience a gradual decline in my health over time
This decline occurred over several

* weeks
* months
* years

Plus maybe
When I was a child I experienced periods of unexplained and severe fatigue, poor concentration, postexertional malaise, unrefreshing sleep or muscle or joint pain

OR

If you had a sudden onset of CFS prior to your onset please assess your health

(a) I was in good health
(B) I was in a period of reduced health
I had a series of nagging colds
I was having trouble sleeping
I was more irritable than usual

Please check any of the following that you experienced in the 6 months prior to your getting ill:

Job loss/job change/housing move/death or serious illness in the family/significant financial problems/relationship issues/team bounced out of the World Cup early/ get list of stressors

If you had gradual onset please please assess your health prior to your gradual onset of CFS

(a) I was in good health
(B) I was in a period of reduced health - please check the following boxes if true

• I had a series of nagging colds
• I was having trouble sleeping
• I was more irritable than usual
• I felt like I was under more stress than usual

Please check any of the following that you experienced in the 6 months prior to your getting ill:

Job loss/job change/housing move/death or serious illness in the family/significant financial problems/relationship issues/team bounced out of the World Cup early/ get list of stressors

Prior to your becoming ill with CFS did you experience temporary periods

• when fatigue not associated with overexercise interfered with your daily activities
• of unusual muscle pain that were not associated with overexercise
• of flu-like symptoms that persisted longer than usual
• when you had more frequent colds than your peers
• when you had difficulty sleeping
• difficulty exercising
• when you had gastrointestinal symptoms such as cramping, diarrhea, bloating and/or constipation that were not identified with a specific disorder
• severe headaches
• difficulty standing
• difficulty thinking clearly
• unusual reactions to foods
• unusual reactions to odors

Did anyone else you know have similar symptoms at the time? If yes,

Please how many of the following people that you knew had similar symptoms

• Immediate family member (parents, siblings)
• Secondary Family member (uncles, cousins, grandparents, nephews)
• Friend/Workmate/neighbor

awol

Gradual onset associated with a series of immunological events (viral infection, fungal infection, toxic exposure, vaccination)

 

[awol]

Cort,

I proposed this addition to your list:

Gradual onset associated with a series of immunological events (viral infection, fungal infection, toxic exposure, vaccination)

I think it is more interesting than just saying no trauma.

 

[Cort]

Thanks for the idea

 

[Enid]

Suggest something along the lines of primary indication onset - Primary or Secondary eg. a) unrelieved sore throat b) physical tiredness c) mental tiredness d) general feeling of being unwell e) vertigos f) swelling of glands g) hypothyroid diagnosis h) viral infection infection diagnosis (specify) i) neurological abnormalties (high spots in the brain) j) any other (specify). Just a thought Cort to find onset indications which might prove useful despite the deterioration that follows. All the best to you all Enid.

 

[Cort]

Thanks Enid - an interesting idea to do symptoms at onset.

 

[Snow Leopard]

What about sudden onset associated with vaccination?

 

[Cort]

Good idea - gotta get vaccination in there

 

[wontgetfooledagain]

Prodrome?

According to Lenny Jason some patients experience several stages or a prodome as symptoms appear and then worsen (easily fatigued to post exertional malaise) and signs such as a positive Rhomberg begin to appear or cognitive symptoms appear.

Also, sometimes a second insult such as a vaccination following an infection can substantially worsen or hasten the disease process as appears to have been the case with Annette Whittemore's daughter.

The wiki for prodromes says: In medicine, a prodrome is an early symptom (or set of symptoms) that might indicate the start of a disease before specific symptoms occur. Prodromes may be non-specific symptoms or, in a few instances, may clearly indicate a a particular disease, such as the prodromal migraine aura.

For example fever, malaise, headache and lack of appetite frequently occur in the prodrome of many infective disorders. A prodrome can be the precursor to the onset of a chronic neurological disorder such as migraine or epilepsy, where prodrome symptoms include euphoria, scotoma, disorientation, aphasia, or photosensitivity.

It also refers to the initial in vivo round of viral replication.

 

[Cort]

So would we ask if people has symptoms associated iwth CFS prior to their getting CFS? This would be an interesting question. We could ask if they temporarily experienced symptom associated with CFS prior to it?

 

[glenp]

So would we ask if people has symptoms associated iwth CFS prior to their getting CFS? This would be an interesting question. We could ask if they temporarily experienced symptom associated with CFS prior to it?

Mine was slow progression, not diagnosed until in my 50's.

As a child my eyes were so sensitive that I could not play baseball and avoided many outdoor activities because of this. I also had a weird infection on my foot that the doctor found unusual. I had bladder and bowell problems. i was generally considered healthy.

I think cfs symptoms pre onset are imporant to consider.

glen

 

[L'engle]

I think I had OI before getting full on fatigue. I remember getting dizzy while shopping a few times and having to sit down in the aisles of a store, though I otherwise had energy. So it's hard to say if that waas part of CFS or only a pre-symptom.

 

[Forbin]

I would also suggest that sudden onset sometimes presents with acute vertigo/dizziness, as Dr. Ramsay noted in...

MYALGIC ENCEPHALOMYELITIS:
A Baffling Syndrome With a Tragic Aftermath
by A. Melvin Ramsay M.D. (Pub. 1986)


"Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting."

http://myalgic-encephalomyelitis.com/Melvin-Ramsay.html

 

[Cort]

Mine was slow progression, not diagnosed until in my 50's.

As a child my eyes were so sensitive that I could not play baseball and avoided many outdoor activities because of this. I also had a weird infection on my foot that the doctor found unusual. I had bladder and bowell problems. i was generally considered healthy.

I think cfs symptoms pre onset are imporant to consider.

glen

I agree - I think that's very important we have to figure out a way to do that.

 

[Enid]

Cort, Could you add gradual and inexplicable weight (unless I'm blind) and never felt "stress" as cause rather ME caused stress as one became less able to fulfill one's obligations whilst Doctors pronounced me well.

 

[Mya Symons]

I am not sure how or if my experience fits these questions

I started out with bouts of swollen lymph nodes with headaches, sore throat and somtimes fevers. My fatigue would last a month to three months related to this and then it would go away. I went through a very stressful period in my life and all of the sudden I had the symptoms listed above plus severe pain. Sometime later I noticed the diziness and nausea when I stood up from a sitting position. I also noticed sometimes my temperature would be lower than normal. I have always had low blood pressure, but not low enough to make me dizzy. Sometime after that the balance problems and the muscle twitching started. I also developed IBS and irritable bladder that I noticed around the same time.