MECFS Diagnosis Medical Questionnaire

[MECFS352]

Mecfs352 is a ‘thinktank’ of tertiary students in Australia (see also @MECFS352 on Twitter) that is building a portfolio of evidence-based information on ME/CFS.

We identified ME/CFS as a serious medical problem in which most patients remain undiagnosed.
We are seeking feedback on a medical questionnaire that we have developed to investigate ME/CFS based on the Canadian Consensus Criteria, International Consensus Criteria and the Institute of Medicine criteria for the diagnosis of ME/CFS.

• We are only seeking general feedback from users of the forum on whether this medical questionnaire:
-Would be viewed as a useful tool for investigating ME/CFS
-Would feasibly allow the assessment of ME/CFS and its severity.
-Whether there might be any issues, problems or inaccuracies that may hamper its effectiveness in investigating ME/CFS

We are not performing research, gathering data or medical information. We do not want individuals to complete the questionnaires. We are only seeking constructive comments both positive and negative on how efficiently this would help patient diagnosis.

Here is the link: https://drive.google.com/file/d/1lb9F1GfKnsSfxnVrzoC07Qw0RZjJUx68/view?usp=drivesdk

We look forward to reading all of your much appreciated feedback!

 

[nerd]

Q2: "When did the symptoms begin?"
For some of us, there is no distinct event of symptom onset because it gradually worsens with sporadically occurring viral infections/reactivations. We could only refer to the last event or the most significant event to this question. In my case, I think I had an EBV reactivation or another viral co-infection for ca. 6 months, but CFS really hit me over a year later, sporadically worsened within a week. It's a simple question for a complex circumstance.

Q4: "Do you recall experiencing any of the following before the onset of symptoms?"
Where would you put gastric/gastrointestinal infections?

Q6: There is a typo in "Do you currently take any regular medications?".

Q6: Some patients might need more space in the "Health/nutrient supplements:" section.

Q7: Some of us might also perceive significant problems when and after going to the toilet. It can be a cardiovascular and muscular burden to do your business.

Q19: "Have you noticed that you take an extended time to recover from infections?"
Do you mean real infections or the flu-like symptoms?

Q21: "Have you recently developed any food or medication intolerances?"
Do you mean real intolerances or food sensitivities in that the patient feels bad after eating it but without any specific allergy or underlying pathology?

Q22 "Do you have any family members that have been diagnosed or experienced any of the symptoms mentioned throughout the questionnaire?"
What is the purpose of this question? In my opinion, this can be completely confounded by the struggle of family members who have to care for CFS patients and are left helpless.

You might also consider adding "air hunger" into the questionnaire. It feels like the brain doesn't get sufficient oxygen anymore, so it's related to the brain fog. But it's also a general feeling that no matter how much you breathe, it doesn't feel like clear air. Its' never enough.

Another symptom can be that the nasal tissue is dry, inflamed, and thereby swollen, making breathing difficult, especially at night.

Another symptom can be dry lips, mouth, persisting thirst, and polyuria.

Tremors might also occur occasionally. The classification of these tremors might also give more insight. Do they come in waves or are they persisting? Do they happen when trying to concentrate on a movement or when relaxing?

Maybe there is a place to associate neck pain with symptom severity as well or at least measure it in the context of another symptom, namely night sweating. Maybe in Q16?

Another symptom that might happen is loss of consciousness.

Another symptom that might happen is a high and poking heart rate. This usually correlates with overall symptom severity and subsequent to exertion, so as an early indicator to PEM.
In extreme cases, this can be accompanied by nausea, by a somnolent state of consciousness (no sleep or tiredness), and by severe air hunger.

There is also a range of connective tissue symptoms. But I don't know how to describe this in a questionnaire because they can manifest diversely.

 

[Wishful]

Q1: Is that health aside from ME? My general health and fitness aside from ME is good, but ME is a really big but. (and pain in the butt )

Q2: Maybe first ask whether ME started abruptly, and have two more questions depending on that answer.

Q3: Doesn't really make sense. Mine started abruptly, with no definite trigger. It changed in various ways over 20 years. nerd's answers would be quite different. Q3 needs rethinking.

Q4 could use at least a 'some other cause' line. The only thing I can remember being a possible trigger was a Tetanus booster some weeks or months before my Me started.

Q6 inspires different questions: "Have you found any treatments that worked significantly for a significant length of time?" and "Have you found any treatments that worked once or twice but then stopped working? (since this seems common with ME)" Another possible question is: "Have you found any treatments that worked for a while and then were no longer needed?" (I've had four that eventually resulted in permanent cures for a symptom). As nerd pointed out, some PWME will need more space.

Q7: Add some cerebral activities, since cerebral exertion can trigger PEM too [I see that Q10&11 takes care of that]. Also, I suggest dropping the word "fatigue", since many of us feel that what we feel is fatigue-like but not actually fatigue. I never consider my ME symptoms as 'fatigue'. Even just replacing "fatigue" with "symptoms" in that sentence would be an improvement.

Q8: Maybe add a second question for cerebral exertion. My cerebrally-induced PEM would have different answers than my physically-induced PEM would.

Q10 depends on the severity of ME at that time. I could probably tick all the boxes in that matrix if I consider my whole 20 years of ME. Maybe make it 'for a typical day'?

Q13: The last question is leading or misleading, since sleep is also a time delay. Does the patient feel better after 8 hrs of sleep, or better after 8 hrs regardless of sleep? More thought needed there.

Q15 doesn't offer a good option for me. I get neuropathic pain depending on other factors that affect my ME, such as specific nutrients, but not dependent on or affected by physical activity.

Q16: I sometimes feel a bit feverish or chilled (duration < 1 hr), sometimes opposite to what my thermometer actually reads, which doesn't fit your available options.

Q17: In my 20 years of ME, I did have a period (few months?) where I did get light-headed after stopping some physical exertion, and even blacked out once, but that issue passed. I couldn't fit that into Q17.

Q21: definitely needs much more room. Maybe a whole other page.

The final open question is good, but maybe expand it to welcome responses from longer than 6 months that the patient feels might be helpful in understanding this disease. I could possibly fill a page with those. *sigh*

 

[Rufous McKinney]

Mecfs352 is a ‘thinktank’ of tertiary students in Australia

We LOVE YOU!

A few misc comments:

spines/necks/mechanical

- spinal birth defects and known deformities should be identified

many of us have known issues in our necks and spines. I have birth defects.

The Neck: is a piece of anatomy that has many issues.

the brain stem- lower, thats where aches and problems often arise. I don't ever get "headaches and migraines".

We have alot of neurological symptosm not captured, generally-

peripheral neuropathies, swellings, missing fingerprints, invisible rashes, numbness, fibro pain, tinnitis, issues with smell, taste, angiodema (possibly allergic).

Cognitive and non physical use of energy-

Cognitive issues can be huge and complex. Merely looking at: the end of my pen, a paint brush or a line drawing of a fern, while lying down - caused immense PEM and near blindness.

Speaking for one hour can cause: severe loss of voice, and strep level pain

There has not been enough attention paid to the cognitive aspects of this illness.

Other External Factors

possible enviroinmental toxin exposure should be included...exacerbating factors.

**
There are people who have been sick for- a couple of years.

I've been sick for 67 years. I wonder if we almost need a couple of versions of questionaires.

Q7 and Q8

Answers to Q8 vary by Q7, so that doesn't work for me.

Example: it might take a few minutes to recover from walking up the stairs.
But it took me 60 days to recover from walking around the block 2 days in a row. I would think thats really important to know. Thats not being captured.

How Severe Are you:

I'm unclear if that is being captured by the questions. There seems to be no questions about- how active are you each day, are you bed ridden, chair ridden,

I do find it difficult at times myself to answer these types of questions.

Q-18

this section needs more work....

Uncontrollable Bladder- there are varied bladder issues, uncontrollable isn't necessarily one of them.

ME folks often have alot of digestive issues. Sometimes we have known diagnosed intestinal issues (IBS-d for instance, can't be noted in Q-18.)

Acute Events- I'd like to see a question that gets at - when we get REALLY bad off.

For instance: 3 months of failure to manage PEM lead me to: almost a year of SEVERELY WORSE with INTENSELY WORSE symptoms. So that can happen....and seems important to note.

What happens in the body if pacing fails and a severe PEM event takes place?

Pacing isn't mentioned- its a common response in patients who are working to feel better. But its when we sort of blow it- or HAVE To do more than we possibly can (get thru an airport, get thru a dental procedure, or medical treatment or test)..that EXTREME adverse events happen.

Maybe a. listing of "other official diagnoses"....?

Examples- known Sleep Apnea

Actual confirmed via testing- oh like SJorgren for example.

Maybe on the spectrum?

Maybe a general questtion that allows other related diagnoses to be included or listed.

 

[Wishful]

I suggest one or more questions about temporary remissions. I think they are important evidence that ME isn't a permanent degenerative state, and that various things can trigger them.

"Have you experienced temporary remissions [how many?]?" (at least half a dozen for me)
"What triggered temporary remissions?" (I could identify three, plus some unknowns)

Maybe also a question about long-term crashes. I never experienced one, but they seem to be a major problem for others. Maybe there's a correlation between crashes and some other aspect of ME.

 

[MECFS352]

Thank you so much for the valuable feedback, as this has provided information for an even more patient focused approach. Especially for Q18 and expanding on other underrepresented symptoms that aren’t mentioned in other MECFS diagnostic guidelines.

 

[TiredBill]

Q1. What would you rate your overall health (fitness, diet, health conditions) out of 5?

My personal question here was the same I'd ask of the recent ME Action survey, and that is "is overall health inclusive or exclusive of ME/CFS symptoms?"

I'd give different answers depending on the criteria.

After 37 years of ME/CFS I would not rate my health "exclusive" of ME/CFS as excellent, but not terrible otherwise. Reasonably "healthful" all things considered.

Include the daily chronic fatigue, brain fog, PEM crashes, etc. and I'd say my health is piss poor.

I'd hope for greater clarity in the question, myself.

Bill

 

[TiredBill]

Q2. When did the symptoms begin?

No answer adequately suffices.

"Symptoms have existed for as long as I can remember" is false, I remember precisely when they began and
"Symptoms began 2+ years ago," while factually correct, seems highly inadequate after 3.5 decades of illness.

Bill

 

[TiredBill]

Q3. How would you describe the onset of symptoms?

Problematic to answer. I became quite ill with a virus out of the blue (overnight). Bedridden. How long did it take for me to realize that PEM (a term that was not yet in existence) was a prime symptom? Not too long. Could I quantify the days? No. I also had initial symptoms (like photophobia, chemical sensitivities, alcohol intolerance, bed-drenching night sweats) that faded over time.

 

[TiredBill]

Q7. Please indicate how many times you have felt fatigue that can be described as
exhausting, feeling unwell or being completely drained after completing these tasks in
the last month. Tick the most accurate option for each task.

For me, experiencing fatigue that could be described as "exhausting" is nearly a constant condition. The greater question for me is how much activity/energy expenditure I can engage in on any given day (and it is highly variable and I'm attuned to my daily capacities) w/o precipitating a PEM crash.

 

[TiredBill]

Q8. After physical exertion (such as tasks listed in Q7), how long does it take you to recover?

Depends. On a typical day, if I pace myself I could do several of the activities in Q7 w/o triggering a PEM attack. But if I tried to do all these on a day when I knew I was experiencing especially low energy, it could be a recipe for disaster.
Maybe you could have a question asking people if their sense of a daily personal energy envelope varies from day to day. Definitely the case here.

 

[wabi-sabi]

We are seeking feedback on a medical questionnaire that we have developed to investigate ME/CFS based on the Canadian Consensus Criteria, International Consensus Criteria and the Institute of Medicine criteria for the diagnosis of ME/CFS.

How about looking into what questions the expert ME/CFS docs ask their patients? It seems like you might be trying to reinvent the wheel here.

Also, how are you going to validate your questionnaire? I mean something like this, although it's a different field:
https://www.americanprogress.org/is...ss-contributes-poor-maternal-health-outcomes/

https://journals.lww.com/clinicalpa...ionnaire_Validation__A_Brief_Guide_for.2.aspx

I'm assuming if you are students you should be working with some sort of faculty advisor that can give you guidance on survey design and validity. The best we can give you is some form of face validity and whether your questions make sense to patients. You've gotten some good answers on what does and doesn't make sense to us already,

What are you doing to ensure reliability and generalizability?

What will the relationship of your questionnaire be to objective measures of the phenomena you are measuring? We've seen lots of problems with subjective measures in research harming patients-looking at you PACE trial!

 

[Wishful]

What are you doing to ensure reliability and generalizability?

To me it looks like they are asking for feedback to avoid problems. They're asking "Would this questionnaire be useful?" and "What problems might arise from using it?" Seems like a good plan to me. It seems like a much better approach than some bureaucrats asking some doctors to come up with a questionnaire.

 

[MECFS352]

@wabi-sabi Thank you so much for your response! The points you have outlined about questioning survey design and validity are important.

At the moment this questionnaire is just being tested on the questions being relevant and consistent with patients lived experiences with MECFS, rather then just literature reviews.

Current diagnostic criteria differ from country to country and patients still hold qualms with the sorts of questions asked. This questionnaire is being tested on suitability for now, as it aims to present compiled and patient focused diagnostics in one place.

We are still in our drafting process, so If you have any more constructive questions/ suggestions all feedback is welcomed!

 

[wabi-sabi]

Current diagnostic criteria differ from country to country

Yes, and that makes me think of another couple questions-
1) Is this going to be a questionnaire for English speaking patients only?

2) If the diagnostic criteria are different enough from country to country that patients with different underlying problems or different subgroups are identified will you have questions that relate to all of these patient experiences or are you primarily targeting your questions to a particular diagnostic criteria?

3) When you are gathering feedback and lived experiences, how are you verifying that the patients you are asking have ME/CFS? Or asked another way, how are you handling self-reported data?

patient focused diagnostics

What are patient focused diagnostics?

 

[Wishful]

3) When you are gathering feedback and lived experiences, how are you verifying that the patients you are asking have ME/CFS?

That might be a good application for machine learning. It would require input from patients who have been diagnosed with ME by the best available experts, but it might help weed out people who don't actually have ME (and could direct them to appropriate other experts). It wouldn't be 100% accurate; I expect it would decide that I didn't have ME, since my ME seems so non-standard.

 

[wabi-sabi]

MEAction is also doing a patient survey.

Link here:https://www.meaction.net/epi/

They have an option for your healthcare person to verify your diagnosis to get around this problem.