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

It may be better to play safe with this. That yellow headline bit with the "ovary reacting" quote looks not to be part of the original document. It appears to be merely pinned on, and possibly covering the original title. Presumably anyone could have done that as a joke in poor taste at the researchers' expense.

If it was placed there by the research team then they should really seek alternative employment.
 
i believe the yellow headline is on same piece of paper as the other words.

but yeah, offensive. poor selection criteria. psych questionnaires that may have ambiguous interpretations*. biomed samples (salivary samples, hormone testing) that might give the appearance of being sciency & objective, but the interpretation can be twisted to suit any purpose or belief. (eg symptoms get worse during ovulation - therefore ovulation causes ME).

and a research supervisor who benefits from ME research that increases stigma & neglect, and allows him to appropriate funds for more dodgy psych research. while the serious biomed researchers struggle to obtain research funds.

* an example is the Hospital Anxiety and Depression Scale: does your heart race ? do your fingers tremble ? you MUST be anxious, so we'll ignore the rest of your symptoms because obviously you're just anxious and misinterpreting normal signs. no attempt to differentiate between emotional anxiety VS orthostatic intolerance and/or POTS, where the body increases catecholamines to compensate for the low blood volume & reduced cardiac preload found in people with OI/POTS.
 
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pteropus said:
i believe the yellow headline is on same piece of paper as the other words.
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You may well be right, but there is what looks suspiciously like a shadow beneath the bottom edge of the yellow, and this would be appropriate given the apparent direction of the light source. It is clearly not a border to the yellow part, as it only appears at the bottom edge. It just looks a little odd to me. But I do have a suspicious mind. What's left of it.
 
chrisb said:
You may well be right, but there is what looks suspiciously like a shadow beneath the bottom edge of the yellow, and this would be appropriate given the apparent direction of the light source. It is clearly not a border to the yellow part, as it only appears at the bottom edge. It just looks a little odd to me. But I do have a suspicious mind. What's left of it.
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i zoomed the photo - there's a blue-green (not black) line just below the yellow title box, the line has a consistent height, and left/right edges that match the text margins. the thumb-tack on the top left of the page, has a shadow inconsistent with that blue-green line being a shadow.
 
[Sarcasm]

Yeah, you see if you change the way you think you can sort your own hormone levels out! Keep them nice and even. Then of course that will improve your ME out. We understand this is difficult so we can generously allow you to completely waste your time and energy on a nice course of CBT.
 
pteropus said:
i zoomed the photo - there's a blue-green (not black) line just below the yellow title box, the line has a consistent height, and left/right edges that match the text margins. the thumb-tack on the top left of the page, has a shadow inconsistent with that blue-green line being a shadow.
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Yes it’s a partial border on the box for the heading in the document - part of the design
 
Ok, so this is a study of women with CFS who are ovary-reacting (I’ll apply benefit of doubt and go ahead and assume he is not talking female hysteria because that would be outrageous and is in fact examining the role of female hormones in ‘CFS’).

So far so good. I fit neatly into the ICC ME criteria but wait a minute, it is only a rare occasion where I manage a neat 30 day cycle. In other words, I have ME (or CFS as it’s called by the medical profession in Australia) and my hormones are a mess (what the study is supposedly exploring but apparently isn’t) meaning I shall never be the winner of a $50 Coles or Myers voucher (sad face) but someone with the symptom ‘chronic fatigue’ and normal menstrual cycles is in with a chance. It’s a crazy mixed up world we live in.

Actually, now that I think about it, the misogynistic headline in yellow, the entry criteria and the questionnaire are increasingly leading me to wonder if he is indeed studying the subjective influence normal female hormoney stuff has on tired lil lasses.

Pass the laudanum please someone, I feel a bout of nervousness approaching.

Edited typos
 
Given that most thought processes occur below the conscious level a questionnaire to elicit them seems... questionable. To say the least. Maybe they should ask patients to make puns instead. This appears to be a more accurate method as shown by the overreact/ovary-react pun on the poster headline which clearly displays the punner's subconscious view of women.:rolleyes:
 
I've realised that a letter to the Ethics Co-ordinator is probably a bit premature. I've sent the following letter to Dr Li, the study lead.

Dear Dr Li,
I understand that you are the lead investigator on a study looking at the effect of hormones on CFS. Can you please confirm that this poster advertising for participants was used for recruitment and was approved by you and Professor Lloyd?

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The term 'ovary-reacting' would be laughably puerile coming from a 16-year old on Reddit. It is a great deal more concerning than that coming from researchers whose findings may impact on the treatment of people with ME/CFS and who are using scarce research funds.

I presume you are aware that people with ME/CFS have to deal not only with a life-changing illness, one that results in a significant proportion of sufferers, men and women, being house-bound or even bed-bound for decades, but also with a perception, unsupported by evidence, that the illness is 'all in the mind' and a product of an over-reaction to the difficulties of normal life? In that context, the question 'Are women with CFS ovary-reacting?' is deeply concerning. If that phrase is thought suitable to be used in a recruitment advertisement it raises questions about the biases of the researchers.

I am interested to know what criteria has been used to select the participants. The criteria on the poster ('Experiencing significant and chronic fatigue') could include participants with a very wide range of causes of their fatigue. The Participant Information Statement is rather better, requiring a diagnosis of CFS and suggesting there will be further screening questions. However it still does not specify what formal criteria schedule is being used. Patients deserve to know what criteria will be used prior to committing their time to a study.

ME/CFS is much more than just fatigue. Indeed, someone who is able to reduce their activity levels sufficiently may not even rate fatigue as amongst their most concerning symptoms. While some people with ME/CFS may have problems with mood, many do not. The selection of items to measure (fatigue symptoms, mood and thought processes) is therefore curious. Why were no objective measures chosen such as steps walked, neurocognitive tests, temperature upon waking or morning heart rate increase on standing?

You don't appear to have any healthy controls or controls with another chronic illness. Is this because you feel that you have a deep knowledge of the levels and fluctuations in fatigue, mood and thought processes that healthy women and women with other debilitating illnesses with similar activity levels experience during their menstrual cycle, as measured with the same instruments that you are using? It is rather surprising that this biomedical study is being run by 3 people from a School of Psychology. Would it not have been useful to have a least one expert in female hormones on the team?

A study of how ME/CFS symptoms vary with changes in female hormones could lead to some useful insights, but I am concerned that a lack of a good understanding of the illness has limited the utility of your work and may even result in recommendations that harm rather than help the progress towards a better understanding of the illness.

I will post this letter and your reply on the international forum Science for ME. You are very welcome to join us there to discuss things further if you would like to.

Kind regards,​
 
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The apparent lack of any controls is an important issue.

The most obvious control for an influence of female hormones on ME would be men with ME with matched levels of disability/impairment.

Any serious study would also have female controls with a different but comparably disabling condition and normal controls (ideally but probablely unachievable matched for overall activity levels)
 
That poster with the "ovary-reacting" gag seems to have taken matters backwards by about 27 years.

David, later quoted with approval by Wessely, said "The term hysteria has been attacked on several counts, but survives. However a straw poll of colleagues uncovered not a single instance where a doctor has used the term "H-word" in front of a patient. Fortunately no serious researchers now claim that hysteria is relevant to discussions on chronic fatigue syndromes...." in
Postviral fatigue syndrome and psychiatry. British Medical Bulletin (1991) vol 4 no 4 @ p981

It may be that we have discovered an alternative term used by Australian researchers. I always thought it strange that David limited his enquiry to use of the term in front of patients. What they say amongst themselves would be far more interesting.
 
Hutan said:
I've realised that a letter to the Ethics Co-ordinator is probably a bit premature. I've sent the following letter to Dr Li, the study lead.
Click to expand...

That's a brilliant letter, @Hutan.

On the subject of women's menstrual cycles and ME, as a decades post menopause woman, I'd say the following as my study with sample size 1:

Before I had ME, I had significant premenstrual mood changes and physical symptoms with every cycle.

After I got ME, I still had the same significant premenstrual mood changes and physical symptoms with every cycle. They were the same effects as before I had ME, but of course had to be coped with on top of my ME symptoms. I'd say it was a simple additive effect, ie one on top of the other, rather than one influencing the other.

Now, decades past menopause, my ME symptoms continue to worsen and this can't be attributed to female hormone fluctuations, since I presumably don't have such fluctuations.
 
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