Questions for Prof Simon Carding of the Quadram Institute, June 2019

I'm currently finalising details but it looks like I will be able to record a Q&A with Prof Carding later this month.

See this thread, https://www.s4me.info/threads/me-cfs-research-at-the-quadram-institute-norwich-uk.9836/, for general info on what work is being done on ME/CFS and other conditions by Prof Carding and his team.

If you have something you want me to ask him, please post below.

 

Question.1. Is the enteric nervous system responsible for maintaining the tight junctions between cells in the gut mucosa?

2. I've heard that there are 2 layers of bacteria , and that the one closest to the mucosa is more biologically active. Can you explain more?

 

Some time ago, I think I read that the Quadram research was designed to produce a blood test to measure whether 'leaky gut' was a genuine thing, or to diagnose is in patients. If I'm not remembering that wrongly, I'd like to know what progress has been made.

 

It would be useful if he could clarify the position of Dr Bansal, regarding recruitment to the future trial of FMT.

In answer to a question at the conference re how to get on the trial, he suggested that the lady's GP should refer her to Dr Bansal at St Helier.
Dr Bansal retired from there last Autumn and his replacement is a psychiatrist with experience in eating disorders!

AFAIK Dr Bansal is only seeing patients privately at St Anthony's in Cheam.

 

I would like to ask what level of specificity of flora (genus species etc) does he believe is the right level we need to draw conclusions between healthy and unhealthy.

I also would like to understand how he thinks diet and ibs symptoms affect the microflora and what are the best methods to exclude these from drawing a false picture for what is going on in people that are sick.

 

3. Do Tuft cells play a role?
4. What about JAK inhibitors ( Lombardi)?

 

5. What role do bile acids play ?

 

Bump, any more questions for him? The plan is to record this next week.

 

Role of mast cells?

 

Male- Diagnosis of ME- 2006-
complex comorbidity- or more of the same?

patient with gastrointestinal problems (intolerance- usual ones, but not confirmed Coeliac)
allergy inflammation including gut problems
thyroid/adrenal presentation but 'normal' on tests ( NHS) but not on adrenal saliva and thyroid 24 hr urinary metabolites testing - ( not accepted by NHS)
Gastritis, reflux,
and development of cardiac problems arrythmias with no structural heart problems found/ and development of Atrial Fib?

 

I'm confused. Is this a question for Prof Carding or a copy and paste of a case study from somewhere? Either way I'm afraid I won't be putting it to him. If you can make it a more general question(s) then it might be something that I could ask of him.

 

The question could be are the Quadram Institute tracking quantifying where gut/digestive problems can lead to development of significant other symptoms/comorbidity in patients with moderate -severe ME diagnosis?

 

NB Slightly off topic but material!

I have contacted Simon's programme manager regarding the proposed GP Fellowship issue flagged up at Investing ME conference. ........

Simon needs to know that some CCGs are not to be trusted,...... ( and these leopards rarely change their spots, if you GET my drift); fail to agree to address the needs of the severely affected which is the main focus for the Quadram work; are leading a proposal to introduce CBT into their service model and have a GP expressing interest in the Fellowship who's background and interest (and lead on the CCG Governing Body) do not inspire confidence and may not be money best spent!

........and I am not the only one.

600 local group members are about to issue a formal complaint against the lead CCG and individual complaints will go to each of the 5 CCGS for failing to address Inequality, placing the severely affected cohort at risk through non provision of services and generally refusing to take ME matters seriously over more than a decade.
Likewise our local Joint Health Overview & Scrutiny support our concerns and have done for 12 years.

Papers issued for next weeks Joint Strategic commissioning meeting for Norfolk and Waveney have some interesting results from the Ipso Mori Poll which back up our concerns, complaints and observations.
https://www.norwichccg.nhs.uk/about...missioning-committee-jscc/jscc-2019/june-2019

Summary:

The CCG 360° Stakeholder Survey is conducted on a yearly basis by Ipsos Mori on behalf of NHS England. The survey assesses how stakeholders perceive the CCGs and the results contribute to NHS England’s statutory annual assessment of CCGs. CCGs can invite a range of stakeholders to take part including Member Practices, other CCGs, Health and Wellbeing Boards, Healthwatch, voluntary sector organisations and acute and community providers.

 

How can the huge variation in gut issues between different people with ME be explained?
Some people seem to have very significant intolerances, whilst others have none....
Does this indicate a different disease to him?

It seems that the incidence of severe food intolerances is increasing. Why does he think this is?

 

Prof Carding and I will be talking tomorrow, Monday 17th, so I'm not taking any further questions.

 

Q&A is now available, https://www.s4me.info/threads/video...on-carding-quadram-institute-june-2019.10186/

Couldn't cover all of your questions but we hope to do a follow-up video at some point in the future, so that may give us the opportunity to include them then.