Open MSc research concerning Chronic Fatigue Syndrome/ME and pregnancy decision making. Being undertaking at Cardiff Metropolitan Uni

A group I am involved with has been asked to circulate this. I'd like some people's opinions first.


New online survey researching into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is available to complete from the link below, please share:
https://t.co/bYAFLFXh3U?amp=1 i.e.
https://cardiffmet.eu.qualtrics.com/jfe/form/SV_bpwpD78IgF6Um0d

 

Here is information on the project supervisors from the University website

Dr. Amie-Louise Prior - https://www.cardiffmet.ac.uk/health/staff/Pages/Amie-Louise-Prior.aspx

From the link above it looks that Dr Prior’s role would be more to do with the processes of the research and being a student, but from the link below it looks like Dr Phillips would be more involved in supervising the research content.

Dr Rhiannon Phillips - https://www.cardiff.ac.uk/people/view/126641-phillips-rhiannon

My initial thoughts are that this could theoretically be a very valuable research area, but I worry that there are potential risks if the researcher and her supervisors do not understand that there is no current evidence based treatment for ME only management strategies and that though we lack adequate data on prognosis it is likely that most participants will remain impaired to some degree indefinitely or could even deteriorate. Developing tools that would help individual women or individual families make such an important decision can only be a good thing, and good research on how such decisions are currently made could only help this, however bad research could result in significant harm to individuals and/or their families.

There are some potential red flags in the information above, not least that the researcher refers to the condition as CFS, rather than ME/CFS or ME. Further psychology overall does not have a good reputation for objectively understanding the reality of our condition.

Also my first thoughts are that not all MSc students would have the experience or the insight to handle the issues potentially raised by such research, so much would depend on the individual student involved.

Personally I don’t understand how people are able to come to a decision on whether or not to have children, and feel lucky in that life had more or less made that decision for me before the onset of my ME in my mid thirties.

However I have eight godchildren and I am very aware that my involvement in their lives has varied enormously on the basis my varying health, so my relationship with each of them is very different. Obviously those who I was well enough to be practically involved with as infants and toddlers I have a much closer relationship than those I could not be so hands on with. Interestingly my ME has not been a totally negative factor, and I do not necessarily have a better relationship with those whose baptisms predate the onset of my ME; for example when two of my godchildren lost their father, because I am not able to work, I had the freedom to spend some months off and on in their home country helping the family with practical and emotional support. However I am very aware that overall I had a choice when to be actively involved and when not which is not open to parents.

[Made some amendments to the final paragraph]

 

Interesting that the cut off dates are 18-50.

Although a friend became a Mum at 18, is it not a much younger than usual age to be considering becoming a parent?

Why cut the age off at 50? There are a number of women older than 50 who had to decide not to have children. They also have some benefit of hindsight as to whether the decisions made all those years ago were the right ones - even if it wasn't what they wanted.

I have to say that no psychological intervention in the world would have made a difference to me. An effective treatment, if not cure, for me would most certainly have.

I'm not sure about this one. Given how many in the field of psychology view ME/CFS I would worry that they would be encouraged to do something that might be not be right for them or their relationship/family. Just as many still believe pushing gradually & steadily increasing activities is helpful.

 

Thanks for the responses thus far. I would be particularly interested in hearing from people who've filled in the questionnaire. I am not in the correct group.

 

They sent a reminder today.

 

I’ll give the survey a go tomorrow and report back

 

The survey took me about 20 minutes. Most of it is dedicated to open and ended questions and free form answers, with multiple choice questions towards the end that cover much of the same ground. It was fairly easy to do.

The main topics are why you have decided (or not) to have children while diagnosed with ME, what made the decision easier or more challenging, what level of support you have from a specialist or other doctor, and how/if you have been able to find information about your options.

The assumption is apparently that everyone has an ME/CFS specialist, which I think is rare. Other than that the survey seems ok for qualitative purposes. Some of the multiple choice questions seemed slightly leading (“his easy was it for you to find X information”).

I’m uncertain about the purpose of the survey?

ETA: If the main goal is to determine what a future study or research enquiry should focus on this seems like a ok first step. On its own it’s probably meaningless.

 

It seems a missed opportunity not to look at why people with ME don’t have children... I’m sure there are lots of people like me who would have loved to have had kids...

 

I was thinking about this the other day, I am very curious about the impact the illness has on having kids. Not for those who do have kids and develop ME after, that's worthy of study on its own, but of the difference in parenting for those who have ME, especially those who got ill rather young.

I was preparing to get married when I got sick. That relationship and another one ended because of my illness. I do not and likely will never have children because of my illness, because I can't even take care of myself and it is simply impossible as a chronically ill man to find a partner in the first place, not that I would be able to have anything meaningful as I'm not sure I could interact with someone more than 10 minutes per day. And then there are the financial reasons for it, of course.

My prediction would be a drastically lower rate of parenting. Something like 80% lower or about that size. Something that is never discussed. Neither is the lack of a sex life, either. Uncomfortable topics that medicine is not interested in, the real-life consequences on one of the most important things in life, destroyed by the criminal negligence of medical institutions at providing the bare minimum of competent adequate care.

I find the lack of interest very dehumanizing, it shows we are not recognized as people with agency and even the right to procreate. Although that's generally true of disabled people in general, in our case it's particularly egregious since the disability is largely the product of choices made by medical institutions and charlatans pushing an ideological belief system. One that destroyed not only the living but even millions of future born.