Doctoral student from Lancaster University at Phoenix Rising Forum

[Mette (PhD student UK)]

Hello Everyone!

My name is Mette and I’m a sociology PhD student at Lancaster University in the UK. I’m carrying out research on direct-to-consumer genetic testing where I’m looking into how individuals make sense of and engage with genetic data. I do not have a background in genetics but in sociology and I’m very interested in how genetic testing, particularly direct-to-consumer genetic testing, impacts on people’s lives.

I’ll be here at the forum observing, but also engaging in conversations and asking questions. I’ve been in contact with Mark and he has agreed to let me do this. If anybody feels uncomfortable about my presence, please let me know and I’ll not include your comments in my study. You can contact me here on PR. Also, if you have questions about my study, please do not hesitate to contact me and I’ll be happy to answer all your questions.

I’m particularly interested in how you use genetic data to understand and make sense of your symptoms and experiences of ME/CFS. I know a bit about chronic fatigue syndrome, but I would like to know more and hear from you. I’m here to learn about how genetic data matters, if it does, and how individuals with ME/CFS make sense of this stuff.

My plan is to follow conversations and post comments and questions on topics relevant to the study. I’m also happy to share my findings with you.

The study has gained ethical approval from the ethics committee at Lancaster University. My research is funded by Intel Corporation.

I appreciate your participation!

All the best,
Mette

 

[Esther12]

Hi Mette.

Is there any direct-to-consumer genetic testing related to CFS? Is it quacky?

I'd have thought genetic testing for CFS patients would only really be helpful in identifying exclusionary diagnoses, in which case the people helped by it are quite likely to end up leaving the forum!

 

[Mette (PhD student UK)]

Hi Esther,

To my knowledge, there are no genetic testing that could diagnose CFS but there seems to be a number of genetic mutations associated with CFS, such as the MTHFR mutations. From what I can tell, the direct-to-consumer genetic testing company 23andMe tests for some of these mutations. What it means I'm not sure. I've noticed people talking about this in the "Genetic testing and SNPs" section on forum.
There are fixed feelings about direct-to-consumer genetic testing. Some find it useful and others don't, but from what I've observed so far, it seems to require some work to make sense of.

 

[Valentijn]

I think interest in genetic testing by ME patients is pretty minimal. While there probably is a genetic component to ME, it isn't a huge part of it - we were all healthy once! It also looks fairly expensive and somewhat obscure.

I'm more interested in lab work that shows what's going wrong with me currently, and has a chance of helping me fix things. The genetic aspect might be useful someday to screen people, but has little application currently. It's probably cheaper to just try whatever treatment/supplements would be indicated by a MTHFR mutation, and see if it helps.

 

[Esther12]

Hi Esther,

To my knowledge, there are no genetic testing that could diagnose CFS but there seems to be a number of genetic mutations associated with CFS, such as the MTHFR mutations. From what I can tell, the direct-to-consumer genetic testing company 23andMe tests for some of these mutations. What it means I'm not sure. I've noticed people talking about this in the "Genetic testing and SNPs" section on forum.
There are fixed feelings about direct-to-consumer genetic testing. Some find it useful and others don't, but from what I've observed so far, it seems to require some work to make sense of.

We've got a genetic testing section, and I never even noticed it!! It looks relatively quiet there.

If there were meaningful tests for genetic abnormalities related to CFS, then even if that did not lead on to any real understanding of the condition or treatment, I guess that could be useful for people to argue against those who believe it is morally acceptable to pragmatically treat all patients diagnosed with CFS on the assumption that their disability is caused by deconditioning or a fear of activity.

I guess that so long as there's such quackery around CFS, and also things like benefit applications, even entirely quacky genetic testing could be useful as a weapon against quacky ATOS assessments. These sorts of politically important decisions rarely seem to be made based upon a careful examination of the evidence, or a concern for the truth.

 

[user9876]

We've got a genetic testing section, and I never even noticed it!! It looks relatively quiet there.

If there were meaningful tests for genetic abnormalities related to CFS, then even if that did not lead on to any real understanding of the condition or treatment, I guess that could be useful for people to argue against those who believe it is morally acceptable to pragmatically treat all patients diagnosed with CFS on the assumption that their disability is caused by deconditioning or a fear of activity.

I guess that so long as there's such quackery around CFS, and also things like benefit applications, even entirely quacky genetic testing could be useful as a weapon against quacky ATOS assessments. These sorts of politically important decisions rarely seem to be made based upon a careful examination of the evidence, or a concern for the truth.

There is talk or hereditory factors in ME and Fluge and Mella point to a general history of auto immune issues in their patients relatives. I assume this would suggest some genes may be associated either with ME or auto immune diseases? I've never thought much about genetic testing - the thing I have never liked with a lot of press stories is the "this is the gene for x". Persumably some diseases may be a complex interaction between several genes and the environment.

 

[Esther12]

Yeah - there have also been twin studies, and other family history studies which would seem to indicate a significant genetic component. It just seems like we're a long way from pinning down the specifics. Given that 'CFS' itself is likely to be caused by so many different things (and the range of different criteria there are for CFS), I expect that understanding the genetic aspects of the condition will be more difficult than for more well defined diagnoses.

 

[Merry]

You are right, Mette, that people on this forum who are interested in methylation protocols have often brought up genetic testing. PR member richvank has offered a simplified version of a protocol used by Amy Yasko in the treatment of autistic children. PR member Fredd also has his own methylation protocol. Either of them could probably provide you with information on genetic testing. Although I have been on richvank's protocol since last fall (and experienced improved health), I don't know enough about the genetic issues to have an opinion about the usefulness of testing. My understanding from reading about methylation protocols here at PR is that people adjust their dosages and diets according to results of their genetic tests.

Because so many people in my family (parents, siblings, son, and my mother's siblings and offspring) suffer from immune and neurological problems and cancer I have wondered if genetic testing would reveal any clues as to why. I have thought having my own DNA tested but decided I don't have the money to spare.

Best of luck to you on your research.

 

[natasa778]

Just to mention that 'hereditary' and high twin concordance does not necessarily mean Genetic (as in 'caused by DNA mutations or variations etc') as there are significant epigenetic influences on hereditary traits. So family history does not prove that inherited DNA sequence is more important in those patients than others...

Also identical versus non-identical twin studies again may not mean as much as is sometimes claimed, as identical twins will simply have similar/same levels of vulnerability to shared Environmental factors. Also identical twins will more often share placenta and amino fluid, so they will be exposed to more similar environmental factors during gestation. So higher concordance in identical twins does not automatically prove genetic causation of disease.

 

[Sparrow]

I've done it. Helped a lot in understanding my wacky reaction to serotonin-increasing drugs, and in realizing just how vital support with methylcobalamin is for me. Not essential, since both of those were things I already knew, but it was very helpful in making sense of the why's behind what I was seeing.

 

[Mark]

I suspect that many of the people who are interested in SNPs tend to hang out in the Genetic testing and SNPs forum. It may have been relatively quiet lately but there are some long threads in there and a significant group of people interested in this. You might find more people by posting a new thread, or posting on an existing thread, in that forum. Some people only monitor specific forums and threads that are of interest to them. You could also contact people who have posted on those threads (via Inbox, top right).

 

[richvank]

Hi, Mette.

You might also join the Yahoo cfs_Yasko group at http://health.groups.yahoo.com/group/CFS_Yasko/
That group started with people following the full Yasko treatment program, which is based on genetics.
Later, I proposed a simplified treatment approach that is simpler and less expensive than the full Yasko
program, so now there are some people there who follow each of these approaches, and some who do something in between. 23andme offers many more SNPs for less money than the Yasko nutrigenomic panel. However, it doesn't include all the SNPs on the Yasko panel.

You could also join Dr. Yasko's forum at www.ch3nutrigenomics.com It is a very large forum, composed mostly of mothers of autistic children, but there is a section called "Parents and Adults," which includes posts about ME/CFS.

Best regards,

Rich

 

[Mette (PhD student UK)]

Thanks everyone for your comments. Getting to know how the forum works..

To Esther,
Yes, I know there are issues around recognising CFS as a serious illness, and the same goes for Fibromyalgia. A family member of mine had her troubles with her doctor, and even friends.

To user9876,
I agree with you on the ‘the gene for x’ problematic, and even though many scientists recognise that it is not so simple, this kind of language dominates many press stories which then causes a lot of misunderstandings and confusion.

To Merry,
Thanks and I’m glad to hear that you’re improving. Yes, it is expensive, so even though they say (here I’m referring to 23andMe) that everybody has ‘a right to their own DNA’, it all depends on who can afford it really.

To Mark,
Thanks on the info about how the forum works. I’ll post in the Genetic Testing and SNP forum too.

To Rich,
Thanks for the links. I’ve seen many refer to Amy Yasko. I’m still learning about what kinds of testing she is doing (compared to for example 23andMe). You couldn’t really classify her testing as direct-to-consumer?

 

[peggy-sue]

I have grave personal doubts about the accuracy of twin studies - it is ridiculous to assume that two children in the same household have the same upbringing. Each child will have their own reactions to things and will interact differently with their parents - and the personality of the child influences how the parent reacts to it.
Not nearly enough attention has been paid to the influnce of peers. Twins will not neccessarily have the same friends.
I also have grave personal doubts about genetic studies which claim things can "skip" generations - having witnessed on far too many occassions that a narccisstic mother will raise a child who is a people-pleaser, who will raise a child who is a narccissist, who will raise another people-pleaser.

There are far too many confounding variables.

 

[searcher]

I did the 23andMe testing. I did the test because I wanted to rule out any genetic diseases that could be causing, or at least contributing to, my symptoms. I have some family members with similar symptoms so thought it was likely there was a genetic component to CFS. I also thought the ancestry information would be an extra bonus. And I am a geek so finding out some of my genetic information is interesting to me.

I am glad I did it although I don't think I have found out any vital information. I have a lot of the methylation-related polymorphisms that Yasko and Rich talk about. I don't know if they are related to my illness since they really aren't that uncommon in the general population. But it is interesting to look up SNPs when different research comes out that could relate to my illness, even though at this point I think the illness has a big environmental component which makes the genetic component hard to tease out.