Clinical Trial at Brighton/Sussex Hospital

[ChrisD]

I am so glad I posted my query on here since I was so close to signing up and recklessly just diving into this study with only a rough scan of the guide, somehow I managed to overlook many of the concerning factors (Maybe a bit brain foggy). I really don't want to waste my time with a study that aims to prove psychological/psychogenic causation of this illness, and I also don't want a Typhoid vaccine (Despite the fact that I was just planning an amazing tour of far east asia i.e. watching a documentary and eating Thai food).

So, I think I will avoid this study. Yet I still have my concerns, that if I don't take part then someone else still will, and this means it will go ahead. I am wondering whether it is possible to design a study to favour a desired result/agenda? I am also wondering what happens if their study fails to prove any of their psychological means, are they obliged to release the results open source? - in which case this could help our cause somewhat.

Also I wonder about the cost of such a study, as I am totally and utterly fixed on the gut Microbiome as causal in this illness, it perplexes me that money could be wasted on such a study and not given to the COEFME in Norwich to focus on Gut Microbiome.

 

[Hajnalka]

Hi @ChrisD, would you get your personal results from the tests in the study? Tried to find out in the info sheet but wasn't clear to me.

 

[Complex CFSer]

Jessica Eccles
Has written on emotional processing affecting autonomic nervous system activity. Not entirely clear what her position is since this material is so vague but it doesn't sound good.

Jessica Eccles is another one of those making everything about mental health, anxiety is one of her preferred research interests.http://www.sussex.ac.uk/profiles/247253/publications

 

[Complex CFSer]

I think they have also admitted it here:

http://www.isrctn.com/ISRCTN7882048...8&page=1&pageSize=100&searchType=basic-search

"The aim of this study is to understand how the body and brain affect each other to cause pain and fatigue in fibromyalgia."

 

[Woolie]

So, I think I will avoid this study. Yet I still have my concerns, that if I don't take part then someone else still will, and this means it will go ahead. I am wondering whether it is possible to design a study to favour a desired result/agenda? I am also wondering what happens if their study fails to prove any of their psychological means, are they obliged to release the results open source? - in which case this could help our cause somewhat.

My impression was also that the researchers are not interested in CFS per se. We're being chosen as an example of a group that over-reports fatigue, to compare our brain reactions to the vaccination etc to those of normals and those that over-report pain.

 

[Complex CFSer]

I have my suspicions the establishment already knows full well what causes CFS. Put it this way, as people with systemic health issues which may include dodgy immune systems or inflammation issues, we are the the last group of people I personally would advise to go and get a vaccination containing formaldehyde (a carcinogen) especially just for a study. https://www.vaccineshoppe.com/image.cfm?doc_id=9372&image_type=product_pdf "CARCINOGENESIS, MUTAGENESIS, IMPAIRMENT OF FERTILITY Typhim Vi vaccine has not been evaluated for its carcinogenic potential, mutagenic potential or impairment of fertility." list of adverse events on P3.

 

[Jo Best]

Also I wonder about the cost of such a study, as I am totally and utterly fixed on the gut Microbiome as causal in this illness, it perplexes me that money could be wasted on such a study and not given to the COEFME in Norwich to focus on Gut Microbiome.

Hi @ChrisD I wouldn't be interested in taking part in this study either for all the reasons and issues raised in this thread, but just to say that it doesn't compete for funding with the Centre of Excellence for ME gut research as it's wholly funded by Arthritis Research UK, which may be because the main focus is fibromyalgia: http://www.isrctn.com/ISRCTN78820481

 

[ChrisD]

@Joh I think it just says that you would receive the Brain scans and that is it, so that probably says a lot already.
@Complex CFSer In fear of sounding judgemental, Jessica Eccles looks so young as well! I am just surprised that more experienced researchers don't carry out these studies.
@Jo Best Sorry I was being a bit flippant there in disappointment at this, I just mean that in the grand scheme of things money should be directed into these areas - or so I believe. Especially Arthritis, Fibromyalgia, they are all fairly gut-centric i would have thought

 

[Complex CFSer]

@ChrisD, absolutely agree about Jessica Eccles. So much research seems to me to be jumping on the bandwagon by bright young things. Not about what's best for the patient. I also had had experience of someone she works with who has behaved very unethically (diagnostic negligence/corruption) in another health area.

Has anyone read this website at all - it's by a doctor (US) who (and she isn't the first to do so) has linked particular health problems, including CFS? http://www.rccxandillness.com/

 

[Woolie]

@Complex CFSer In fear of sounding judgemental, Jessica Eccles looks so young as well! I am just surprised that more experienced researchers don't carry out these studies.

Can I just urge caution in these types of statements? Ask yourself whether you would likely comment this way if the photo showed an equally young looking male. Young+woman in our society = not being taken seriously.

Actually, Eccles does seem to quite junior - looks like she finished her PhD in 2011 or even later - but you can get that from the dates, no need to use the photo.

Still, PhD plus several years postdoctoral experience. That makes her pretty well qualified in my book.

 

[Valentijn]

Has anyone read this website at all - it's by a doctor (US) who (and she isn't the first to do so) has linked particular health problems, including CFS? http://www.rccxandillness.com/

Yes, it's a bunch of nonsense.

It's also off-topic. If you want to discuss it further I recommend you doing so on the thread about it at http://forums.phoenixrising.me/inde...dule-may-explain-overlapping-syndromes.44362/

 

[ChrisD]

Can I just urge caution in these types of statements? Ask yourself whether you would likely comment this way if the photo showed an equally young looking male. Young+woman in our society = not being taken seriously.

Actually, Eccles does seem to quite junior - looks like she finished her PhD in 2011 or even later - but you can get that from the dates, no need to use the photo.

Still, PhD plus several years postdoctoral experience. That makes her pretty well qualified in my book.

That's a fair point @Woolie but I would have to say that I would be equally concerned if it was a young male too. The point I am trying to make is that I feel very confident in scientists like Ron Davis who have 30 years+ Biological experience and that's all really.

 

[ScottTriGuy]

So, I think I will avoid this study. Yet I still have my concerns, that if I don't take part then someone else still will, and this means it will go ahead. I am wondering whether it is possible to design a study to favour a desired result/agenda? I am also wondering what happens if their study fails to prove any of their psychological means, are they obliged to release the results open source? - in which case this could help our cause somewhat.

Also I wonder about the cost of such a study, as I am totally and utterly fixed on the gut Microbiome as causal in this illness, it perplexes me that money could be wasted on such a study and not given to the COEFME in Norwich to focus on Gut Microbiome.

You have a lot of validation questions / concerns about the study...if you did take part as you may get some answers or make anonymous reports as to your experience that serve to discredit it or...

 

[anniekim]

Theories of central causation only work if ignoring patients and their symptoms. I don't doubt that there is brain involvement, but it seems to be an effect of muscle dysfunction, not a cause of it.

@Valentijn, sorry I know this is a very old post, but can I ask how muscle dysfunction could effect the brain? Thank you.

 

[Complex CFSer]

Yes, it's a bunch of nonsense.

It's also off-topic. If you want to discuss it further I recommend you doing so on the thread about it at http://forums.phoenixrising.me/inde...dule-may-explain-overlapping-syndromes.44362/

I don't know on what you base that statement. I read the thread and everything written sounded intelligent and was supported by comments on the thread and a research link.

 

[ChrisD]

A friend has just notified me about a talk Dr. Neil Harrison is giving at the Sussex NHS partnership on the 17th October called ''Brain and Body Research Seminar''

https://www.eventbrite.co.uk/.../brain-and-body-research...
https://www.sussexpartnership.nhs.uk/seminar-programme
https://www.sussexpartnership.nhs.uk/about...
https://www.sussexpartnership.nhs.uk/immunopsychiatry-clinic

'Investigating the role of immune system in psychiatric disorders'

It concerns me that they are going about ME/CFS in this way.