Blog: Lloyd's Fatigue Clinic study asks “are women with CFS ovary-reacting?”

[Ravn]

Pass the snuff and loosen the corsets – they’re back to researching hysteria

Professor Andrew Lloyd is the only advisor to the National Disability Insurance Agency regarding the debilitating neurological disease Myalgic Encephalomyelitis, a type of Chronic Fatigue Syndrome (ME/CFS). A poster for a study being undertaken by his ‘Fatigue Clinic’ at the University of New South Wales asks the sexist question “are women with CFS ovary-reacting?”

"Ovary-reacting???!!!

Read the whole post by ISHO (In Susan's Humble Opinion) here:
https://ishoblog.com/2018/10/18/pas...08nkuRdpYynFghkQe_3kFphx5Amb-C9XoA8ygVh4ulxz0

 

[Hutan]

Are women with CFS ovary-reacting?
Well, this study certainly won't tell us. Because the only criteria related to illness is that women must be
"experiencing significant and chronic fatigue".

And this is from the clinic of the man who regards himself as the shining light of Australian CFS research.

@dave30th - I think you are needed here.

 

[Inara]

Incredible. Dumbness is infinite indeed. At the same time, these developments are disturbing.

 

[Invisible Woman]

Oh dear..... Where would you even start to describe how poor this is?

For a start not all "significant and prolonged fatigue" is the same and certainly does not equate to chronic fatigue syndrome.

I would love to know what they are planning to rule out -- for example thyroid disease, anaemia, diabetes, etc., etc.

I fear the poor choice of title demonstrates the contempt of the researcher and a further trivialization of the impact ME/CFS has on the lives of patients.

 

[Matt (@DondochakkaB)]

It's sort of a gift really, absolutely carelessly offensive.

It's like a parody come to life. I would imagine you might find a lot of allies to denounce this.

 

[Skycloud]

Anyway,
I found this:

PARTICIPANT INFORMATION STATEMENT AND CONSENT FORM

Ovarian hormones and symptom severity in chronic fatigue syndrome.
CFS Group
Dr Sophie H Li

https://unswpsy.au1.qualtrics.com/jfe/form/SV_d5837GYlXvpZEVf

 

[Skycloud]

Funded by the Mason Foundation, looking for women with a CFS diagnosis but doesn't say what inclusion criteria they are using.

Using questionnaires, saliva, and urine samples.

hmmm.

 

[Invisible Woman]

Inclusion criteria say-

• Have regular menstrual cycles (25-35 days in length)

Well, which is it? A cycle with a ten day variation range or a regular cycle?

Questionnaires again. Though they are in addition to saliva and urine tests done at home. So the questionnaires ask

questions about your fatigue symptoms, mood and thought processes. On the first occasion it should take approximately 45-mins to complete, and 30-mins on each subsequent occasion.

They also say:

We don’t expect this questionnaires, saliva sampling procedure or the hormone testing to cause any harm or discomfort

45 minutes of filling in a questionnaire would completely wipe my cognitive function. Especially, as they seem to expect you to do it all on the same day.

 

[adambeyoncelowe]

Inclusion criteria say-


Well, which is it? A cycle with a ten day variation range or a regular cycle?

Questionnaires again. Though they are in addition to saliva and urine tests done at home. So the questionnaires ask



They also say:

45 minutes of filling in a questionnaire would completely wipe my cognitive function. Especially, as they seem to expect you to do it all on the same day.

I think they're saying it should be regular and within a normal range. So someone whose cycle is 33 days every time would be fine, but someone whose cycle is 25 one month but 35 the next would not, because it's not 'regular'? I agree it could be worded better.

 

[Revel]

I had one of my ovaries removed last month. How soon should I feel 50% less fatigue? Anyone?

 

[Hutan]

Hmm
The flyer criteria is 'experiencing significant and chronic fatigue'.
The fine print says ' a diagnosis of chronic fatigue syndrome' and apparently there are screening questions about symptoms.
So, ok.

But I note that the flyer says :



While the fine print says

 

[Hutan]

 

[James Morris-Lent]

Absurdly insensitive heading notwithstanding, I don't see how testing hormones is offensive or has any necessary connection to hysteria. That said it doesn't look like a particularly promising science project.

 

[Invisible Woman]

I think they're saying it should be regular and within a normal range. So someone whose cycle is 33 days every time would be fine, but someone whose cycle is 25 one month but 35 the next would not, because it's not 'regular'? I agree it could be worded better.

I know - I'm being pernickety. It's just that cognitive dysfunction and brain fog are fairly common and significant symptoms, so they should take extra care to be very clear.

One of my major bug bears about questionnaires is they frequently have poorly written (deliberately?) ambiguous questions. The fact that this is acceptable has facilitated patients being mislabeled and symptoms being misinterpreted.

If they can't get the straightforward inclusion criteria nice and clear what will the questionnaires be like?

 

[dave30th]

And this is from the clinic of the man who regards himself as the shining light of Australian CFS research.

well, the "leading light"--but I'm not sure how brightly it's actually shining.

 

[Invisible Woman]

View attachment 4503

While the fine print says
View attachment 4504

So. They are deliberately misleading people from the start. We go from you will be paid $50 to you will be entered into a draw for $50.

As the draw takes place after the study is concluded it may be possible that if one pulls out of the study they won't even have their name put into the draw. Doesn't sound very ethical.

 

[Sean]

I had one of my ovaries removed last month. How soon should I feel 50% less fatigue? Anyone?

So does that mean us men should have 100% less fatigue?

One of my major bug bears about questionnaires is they frequently have poorly written (deliberately?) ambiguous questions.

The questions typically tell us more about the people who wrote them, than about the people who answer them.

 

[Inara]

Anyway,
I found this:

PARTICIPANT INFORMATION STATEMENT AND CONSENT FORM

Ovarian hormones and symptom severity in chronic fatigue syndrome.
CFS Group
Dr Sophie H Li

https://unswpsy.au1.qualtrics.com/jfe/form/SV_d5837GYlXvpZEVf

Who can participate:

Have regular menstrual cycles

Wouldn't regular menstrual cycles indicate normal hormone levels? What's the sense of that? Or is it just to show that women with CFS are goats that react too sensitive to their hormones?
Grrr.

 

[adambeyoncelowe]

So. They are deliberately misleading people from the start. We go from you will be paid $50 to you will be entered into a draw for $50.

As the draw takes place after the study is concluded it may be possible that if one pulls out of the study they won't even have their name put into the draw. Doesn't sound very ethical.

And it's a voucher, not cash.

 

[Skycloud]

If they can't get the straightforward inclusion criteria nice and clear what will the questionnaires be like?

Based on what we know so far we don't know the inclusion criteria. The information thus far is for gathering a pool of potential subjects to draw from. I suppose somebody could contact Dr Li to ask about it.

eta - they could also ask if the voucher is for anywhere good