Open UK: People with severe ME needed for HHV-6 study (can be done from home)

https://cureme.lshtm.ac.uk/join-our-research-people-with-severe-me-needed-for-our-hhv-6-study/

CureME research team:

Join our research: People with severe ME needed for our HHV-6 study

We are currently seeking individuals diagnosed with severe ME to participate in our Human Herpesvirus 6 (HHV-6) study. We have successfully recruited participants with mild/moderate ME and healthy controls, however, we’re still looking for people who are severely affected to take part.

Including people with severe or very severe ME is essential for thoroughly investigating the connection between ME/CFS and HHV-6. Gaining insight into how these groups relate to HHV-6 could provide invaluable understanding of the condition.

What is the HHV-6 Study?

Our research team is embarking on a study designed to explore the association and temporal relationship between HHV-6 DNA concentration and the severity of ME/CFS. Herpesviruses are of interest to researchers in the ME/CFS community due to their potential to affect the immune system and overall health.

How can I help?

We are actively seeking people aged 18-59 with severe or very severe ME to participate in our HHV-6 study.

• You should not be taking any drugs that could affect the immune system (these include steroids and antiviral drugs).
  
• You should not have a history of major illnesses including cancer, heart disease or major psychiatric illness.
  
• Your ME/CFS must have been diagnosed by a GP or specialist.

We recognise the challenges that individuals with severe ME experience when participating in studies, so we aim to make it as accessibly as possible. You will receive specially designed packages for saliva collection, allowing for non-invasive and convenient biological sample collection. Over six months, you will return these samples for analysis.

Additionally, you will be asked to complete weekly symptom questionnaires online using our new CureME participant portal.

How to get involved:

Fill out our contact form and a member of the team will get back to you.

 

It would be interesting to know what they really mean by this. I doubt many people in UK have been dx with "severe ME" - i'd have thought most will have CFS on their records and no detail of severity. I know one person with ME/CFS who was told by her GP that her case was "very severe" despite still being able to work part time (this was seen as her valiantly 'pushing through')

So what do they see as 'severe'? And how will they define it? Does it give those details anywhere i cant see them on the link?

 

I am not sure where it is written but CureME defined categories for the ME Biobank. Caroline Kingdom, who I central to this, visits people who are bed bound. I think they have a very severe category too. It might be in an original ME Biobank paper.

 

@JohnTheJack asked the question on Twitter. Their reply was
"Great question John! The definition our team uses is "bed bound or house bound", but if you want to know more about the criteria you can contact them here: https://cureme.lshtm.ac.uk/contact-us/. Hope that helps."

 

Thanks @Jonathan Edwards & @Andy

 

My dear best friend died from complications of M.E after 18 years of severe illness but wasn't bedbound. He was able to drive to Costco and Home depot to buy garden supplies and shop a little. He was more mobile than I was and was able to leave the house at least twice a week. He was a patient of Dr. Chia for over 11 years and was one of his 'sickest patients' who didn't improve from any treatments. He slowly deteriorated.

Yes, he was VERY ill and felt 'poisoned' with horrible symptoms but took meds to calm his 'poisoned brain' which helped him get through the day.

We are all different, some of us are unable to leave the house b/c of OI, dizziness, weakness, viral infection et so labelling people as mild, moderate or severe based on how many times they're able to leave the house means . . . ?

 

They have paused recruitment