ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

[Scarecrow]

Incidentally we're really losing something on this board by not having a quote-within-quote display mechanism when we argue with each other.

You mean like this?

Its just that it sounds like creationism to me

No, it's an anthropomorphosising metaphor which is ok providing everyone assumes the exact same amount of metaphorical anthropomorphosis vs. actual conscious intention, but of course they don't.

You can use the multiquote function and then cut and paste one quote into another.

 

[Wolfiness]

So you can! But SimpleMachines forums do it automatically - you'd tinker with the HTML if you wanted to opt out of requoting the quoted quote rather than to opt in - which for a group of disabled people might be more helpful. Certainly I see people not bothering to requote in places where it might help to have in front of us the post to which the post they're quoting was responding. The next turtle down, like.

 

[Hip]

Its just that it sounds like creationism to me

This is a bit of an aside, but you may be interested to know that you don't have to invoke creationism in order to bring conscious choice or conscious intention into play in evolution. Even in standard Darwinian evolution, conscious choice almost certainly plays major role in the process of evolution, at least for higher creatures, and thus the mind itself may have a dramatic impact on evolutionary outcomes. Although very few people are aware of this.

 

[Hip]

I believe ´otiose´ has won the word war.

Yes, I was rather discombobulated when I saw that word.


(Those in the UK will remember the Blackadder Dr Samuel Johnson's English Dictionary sketch.)

 

[lansbergen]

A veterinarian promoted the concept of "sickness behavior"; let the vets keep it since they cannot simply ask their patients to explain their symptoms.

Sickness behavior is a sign an animal is not healthy .

 

[duncan]

@lansbergen , understood.

Vets usually don't have as much patient input as human doctors. They have to go by observed symptoms, as opposed to reported symptoms. I suspect if a cow volunteered it felt dizzy or was in pain, the vet would be inclined to believe it, and not write off those self-reported symptoms as false illness beliefs.

 

[Mel9]

M

@lansbergen , understood.

Vets usually don't have as much patient input as human doctors. They have to go by observed symptoms, as opposed to reported symptoms. I suspect if a cow volunteered it felt dizzy or was in pain, the vet would be inclined to believe it, and not write off those self-reported symptoms as false illness beliefs.

Mr Mel says'if cows could report that, it wouldn't be long before vets had the same attitude as doctors towards humans

 

[Wolfiness]

Yes, until 'all your tests came back normal'. One of the most crucial and unenviable decisions a doctor has to make must be when to trust your patients and when to decide that you know better.

 

[duncan]

@wolfita, trust one's patients for what? Deciding doctors know better about what?

When did the patient abdicate her right to experience, and to candidly and confidently report her experiences? When did the clinician usurp control of the patient experience, and assume the uncanny ability to discern experience from...something else, and then make pronouncements and decrees accordingly?

When did patients sharing their symptoms devolve into a third party making observations about sickness behavior?

 

[Wolfiness]

Duncan, I don't think it's a contentious statement, nor was it intended to be specific to ME.

Doctors know better than their patients when their patients are misinformed or deluded about facts. In ME patients‘ facts regarding their illness are generally better sourced than their doctors', so ME would be a lot better understood if more doctors believed their patients' experience. They are failing us when they don't and when they assume that they already know enough that they don't need to investigate further.

But doctors also get people with or without ME saying they experienced an antibiotic curing their cold, or a homeopathic pill curing anything, or a toad giving them a wart, and they need to be able to tell whether that's what really happened or not. I think deciding whether you have enough evidence to make a judgement about something or whether you need to investigate further is an unenviable task.

 

[duncan]

Sorry, @wolfita, my questions were meant to be rhetorical.

 

[Wolfiness]

Oh, phew! I thought my ego had just got me into an argument that my body can't cash.

Off to bed

 

[charles shepherd]

I will shortly be off to London for two days involving parliamentary and research meetings - so will not be contributing to this discussion again till Thursday

 

[taniaaust1]

Yes, it's a good list

We have now added:

1 Satellite clinics more local to where people with ME/CFS live, since getting even to an accessible Centre can be a major issue.

2 A transition service for teens and young adults who don't necessarily engage well with children's specialists and often have an additional overlay of the emotional and hormonal issues of adolescence. This group often find acceptance of their limitations very difficult and pacing especially hard to implement.

3 Proper investigation and treatment of OI and POTS and any other conditions that are more common in people with ME/CFS (e.g. hypermobility syndrome, migraine-type headaches and irritable bowel syndrome symptoms)

Original list prepared during patient interaction session at the meeting:

INTERACTIVE SESSION: WHAT DO PATIENTS WANT FROM A GOOD HOSPITAL BASED ME/CFS REFERRAL SERVICE?
Moderated by Bill and Janice Kent from ReMEmber


Members of the audience listed all the key components that they want to see included in a hospital based referral service for people with ME/CFS:

1. All patients to be examined by an expert consultant physician
2. Prompt referral and accurate diagnosis
3. A domiciliary service for the severely affected
4. A clinical nurse specialist for the severely affected
5. A specialist occupational therapist
6. A dedicated service for children with ME
7. Recognition from all these practitioners – and GPs – that this is a biomedical condition
8. Compulsory re-training for all healthcare professionals who provide services to ME patients
9. Better access. Some clinics are located upstairs in buildings without lifts, and some have no parking facilities (or inadequate parking)
10. Access to a specialist doctor for more than the 12 months currently offered before being referred back to their GP who is probably not knowledgeable
11. An annual review like that offered by Stoke Mandeville to spinal injury patients… This would allow ME patients to contact their ME unit (e.g. by phone) if they should encounter problems their GP can’t help with.

You are missing something which could be quite important on that list, a ME aware social worker. ME people end up due to their issues in all kinds of problematic situations. I often need help with lettters, forms and someone to phone places for me to sort out the mess Ive made with things due to my brain issues.

 

[anni66]

I think there are a number of reasons why health workers MAY be at increased risk of developing ME/CFS

First is the obvious fact that in some cases this involves dealing with people who have infections

Second is the increased use of vaccinations for occupational health reasons - I have collected a considerable number of health workers over the years who clearly predate the onset of their illness to a vaccination, hepatitis B in particular

Third is that health workers tend to be very conscientious and often continue working when ill - I certainly did and I believe that this made my condition considerably worse as a result………

Fourth (and I know some will disagree strongly) is the fact that some aspects of medical work are very stressful - both mentally and physically - and as already discussed, I believe that chronic stress (due to the effect on the HPA, cortisol and immune system function) can play a role in making some people more susceptible to developing ME/CFS when the right trigger factor (i.e. an infection) appears

I would broadly agree with this theory, but i think stress has to be chronic ( initiating gut dysbiosis, cytokine response, inflammation etc) as part of the jigsaw. My daughter went through bullying at school, had significant growth spurt problems ( osteochronditis) which would ratchet up inflammation levels, had vaccinations ( i think we need to look at number and timing of these HPV seems to cause issues for those who have underlying inflammation). She was also a high achiever, as many with ME are, which is a self induced stress . Glandular fever was the trigger, but there were many things in place prior to this which effectively got us to where we are now.

 

[charles shepherd]

I would broadly agree with this theory, but i think stress has to be chronic ( initiating gut dysbiosis, cytokine response, inflammation etc) as part of the jigsaw. My daughter went through bullying at school, had significant growth spurt problems ( osteochronditis) which would ratchet up inflammation levels, had vaccinations ( i think we need to look at number and timing of these HPV seems to cause issues for those who have underlying inflammation). She was also a high achiever, as many with ME are, which is a self induced stress . Glandular fever was the trigger, but there were many things in place prior to this which effectively got us to where we are now.

STRESS and ME/CFS

Regarding stress and ME/CFS, there are (in my opinion) two important points:

1 Chronic stress can disrupt the hypothalamic-pituitary-adrenal axis and cortisol production from the adrenal glands. So when a significant acute stressor then appears - eg an infection - a past history of chronic stress could well be creating fertile ground for an infection to trigger ME/CFS

2 In addition, once ME/CFS has occurred, any form of on-going chronic stress - relating to problems with doctors, family, benefits, finances etc - is probably going to have a negative impact on any possible recovery proces in ME/CFS

The role of stress and immune system stressors - acute and chronic - on the body cannot therefore be ignored in ME/CFS.

And where present, these factors do need to be addressed in the overall management of ME/CFS

In addition:

1 We have an MEA information leaflet covering all aspects of stress and ME/CFS - from the MEA online shop:
http://www.meassociation.org.uk/shop/management-leaflets/coping-with-stress/

2 There is further information on stress and ME/CFS in both the MEA purple book and the CMO Working Group Report on ME/CFS - the latter can be downloaded from the document archive section on the MEA website:
www.meassociation.org.uk

3 I also cover stress (and legal cases involving stress) in 'Living with ME' (my Vermilion paperback) - which can be obtained free from any UK public library


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[anni66]

STRESS and ME/CFS

Regarding stress and ME/CFS, there are (in my opinion) two important points:

1 Chronic stress can disrupt the hypothalamic-pituitary-adrenal axis and cortisol production from the adrenal glands. So when a significant acute stressor then appears - eg an infection - a past history of chronic stress could well be creating fertile ground for an infection to trigger ME/CFS

2 In addition, once ME/CFS has occurred, any form of on-going chronic stress - relating to problems with doctors, family, benefits, finances etc - is probably going to have a negative impact on any possible recovery proces in ME/CFS

The role of stress and immune system stressors - acute and chronic - on the body cannot therefore be ignored in ME/CFS.

And where present, these factors do need to be addressed in the overall management of ME/CFS

In addition:

1 We have an MEA information leaflet covering all aspects of stress and ME/CFS - from the MEA online shop:
http://www.meassociation.org.uk/shop/management-leaflets/coping-with-stress/

2 There is further information on stress and ME/CFS in both the MEA purple book and the CMO Working Group Report on ME/CFS - the latter can be downloaded from the document archive section on the MEA website:
www.meassociation.org.uk

3 I also cover stress (and legal cases involving stress) in 'Living with ME' (my Vermilion paperback) - which can be obtained free from any UK public library


Dr Charles Shepherd
Hon Medical Adviser, MEA

Thanks for this reply. Given that cortisol modulates 300+ genes, and stress has been shown to be epigenetic, there may be more profound aspects. I havn,' t yet gone down the 23andme route, but we do have an elevated histamine response and problems with benzoates so it may be worth looking into too.

 

[anni66]

It is also disappointing that given a trigger of glandular fever, with pre existing herpes virus ( chickenpox) that neither our gp nor paediatrician can consider antivirals . It would be advantageous to address the infection before it becomes chronic, but neither have the inclination to consider this course of action. In Scotland there are no paediatric guidelines, so potentially more flexibility, but sadly the knowledge base is not there to exploit this. I have a paediatrician at a loss, ( i am slightly concerned that Esther will be consulted as seemingly she has been up previously) a gp with a nice smile and suggestions on pacing but have to fight to get a physio ( concerned re future osteoporosis), and the prospect of OT is non existent. Educational options are a bad joke which compound confidence issues. Whilst this forum is a great knowledge base, the resulting frustration at not bring able to access any form of treatment which would preserve and potentially improve function does no family member any good . I shudder to think what lies in front of us when daughter progresses into adult services at the end if this year. My eldest daughter, having worked on help to devise a molecular probe to explore complex II for reperfusion injury for her degree is now moving into a masters for stratified medicine in the hope that personalised genomic approaches will push the frontiers forward .

 

[NelliePledge]

I would broadly agree with this theory, but i think stress has to be chronic ( initiating gut dysbiosis, cytokine response, inflammation etc) as part of the jigsaw. My daughter went through bullying at school, had significant growth spurt problems ( osteochronditis) which would ratchet up inflammation levels, had vaccinations ( i think we need to look at number and timing of these HPV seems to cause issues for those who have underlying inflammation). She was also a high achiever, as many with ME are, which is a self induced stress . Glandular fever was the trigger, but there were many things in place prior to this which effectively got us to where we are now.

I think you've got a point about chronic stress as a contributor. I had gastroenteritis followed 3 weeks later by nasty chicken pox age 28, recovered ok,. then 8 years later start of 15 horrendous years with parents illness, one sudden death one very prolonged ordeal with severe dementia. i started having insomnia at this time - years later through hypnotherapy I worked out it started due to night time wandering of parent while I was there at weekends coming into the bedroom and switching the light on waking me up in the middle of the night. So had made me become a light sleeper. I had problems handling phone calls due to receiving many calls from relapsed alcoholic parent. After first parent died a dr told us parent with dementia would only last 12 months every time I got a call from sibling for the next 12 years I was expecting that news. Calls all had to start with "it's nothing urgent" so I could stop panicking. I was undergoing anticipatory grief was struggling with persistent low mood and my immune system was low. I know these are all things that can and do happen to many people who don't get ME but as a factor in lowering my immune system I feel this prolonged stress did play a part. I have had poor health for the last 7 years laryngitis, swollen glands, flu type symptoms diagnosed 20 months ago 5 months after I was diagnosed my second parent died and despite sadness I felt like a huge weight had been lifted from me. I still have ME I'm lucky in that it is mild (moderate when symptoms at worst) and seems to be staying at that level. Sorry this has turned into a life story but I just wanted to explain why I feel stress played a part.