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

[taniaaust1]

So they were all doing the same rota and none of them got chicken pox or ME? Does that include all the nurses that often do 12 hour shifts and nights that came into contact with the patient also, did they get ME?

Do you know if any of the other hospital staff, like porters or the meal service people who work long hours for little pay, who would have been around the chicken pox patient got the same virus or ME?

What about the patients family who would have been in direct contact with him, did they contract the virus or get ME?

Do you know if the student doctors who are now on strike to fight against the appallingly long difficult hours they work contract ME in any significant numbers as they are in constant contact with sick patients also?

I feel like this post is taking it too far, of cause he doesnt know, if he knew of others coming down with it too from this patient and getting ME as well, Im sure he probably would of said.

I dont understand the why of this post which comes across almost like an attack.

 

[taniaaust1]

I cannot recall anyone else in the hospital - staff or patients - catching chickenpox from this patient

Remember, chickenpox in adults is fairly uncommon - partly because many adults have caught it as a child (which I did not)

I wonder if there is something different about your system which caused you to catch it later then most. Are we different in the first place immune wise, I'd like to see that studied.

I myself have never had chicken pox thou Ive taken care of children who had it and my sisters and friends caught it when I was a child and I didnt avoid them either.

I see something being as quite different about my system then most, some illnesses which most get I just dont get (I dont think I even had one day off of school with a cold or flu in junior primary and hardly ever had a day off in high school either, Im not sure if I got flu or a cold in high school either (maybe once if that), others would get sick but not me, I had no fear of catching these things from others as I knew I just didnt get them.

Instead I had measles when I was 3 (a blood transfusion for something else at 4 due to I hemorraged from some common surgery which should of been simple) and I had abnormally severe EBV when I was a teen and spent a whole term bedridden with this so sick I was hallicinating and collapsed a few times. I think whatever predisposed me to getting the severe EBV as a teen also may of prevented me from getting colds and flus before ME, I believe it also predisposed me to getting ME 10-11 years later.

Possibly a clue to an immune fault in my system is my daughter who as a child had a 1:50,000 condition in which her body couldnt fight HPV which then caused a lot of problems, years of surgery due to this for her. (she caught that from me when I gave birth but it didnt manifest till later). Why couldnt her body fight this common thing causing rare complications. Maybe I have whatever defect she has?

As far as health workers today are concerned, I know a considerable number of doctors and nurses who have developed ME/CFS and whilst not backed up by any epidemiological evidence my gut feeling is that there is an increased incidence of ME/CFS amongst health workers (and teachers as well)

I believe that too or at least work in the health profession in some way. It may not be stress caused by this kind of work though but rather increased contact with viruses etc.

 

[taniaaust1]

Much the same can be said of parents, @charles shepherd . But parents are not more likely to develop ME/CFS - at least, not that I am aware.

when people refer to stress maybe being involved in some way in thier ME, they are refering to abnormal stress. Yes everyone gets stress but I do believe some jobs may be more stressful then others (any job in which have people dying on you could be more stressful, any job which involves shift work or double shifts would be more stressful then someone working a nine to 5 easy job).

I had abnormal stress. I was a "sole mother" of 2, raising a "severely disabled child" who needed regular physio and was in a wheelchair, incontinent with behavourial issues etc .she has aspergers on top of her physical disabilities so was often violet to the point I was worried she could stab me while I was asleep as she was unpredictable if she got mad and she hated me (blamed me for her disability cause I didnt abort her like she said she should of been). She put holes in the house walls.

She required lots of extra supervision then a normal child (she'd nose dive off of wardrobes on purpose and end up with concussion, no safety sense, she concussed herself so bad that one episode had her blind for a short time). I got ME when I was dealing with this and also studying full time (1hr travel each way to get there) while trying to raise my daughters alone.

I also at that time I think may of also been dealing with my schizophrenic father who was undiagnosed at that time but causing a ton of trouble in the town and scaring people (hiding in peoples sheds, scaring the children at the school etc. I had people in middle of the night comng to my door asking me to please do something about my father but he wouldnt go to a dr and I couldnt get the mental health people at that point to do anything until he was arrested as he was scarying people by the police.

He had severe paranoia and thought people were out to get him)... so I actually sleeping with an axe under my bed in case he decided to try to murder me and the kids with his delusions. How many people do you know having to sleep with an axe under their bed and worry they may have to kill their own father? With all this, when I did exams and assignments for college, I just started crashing into ME symptoms.

When people say they think stress was involved some in their illness, they arent usually refer to normal life stressors which everyone has eg "just being a parent", usually they mean they had stress out of the ordinary going on. I know everyone gets stress in thier life but they dont usually get the amount of stress I had going on in my life at that time.

When people say they believe some stress in their life may of "helped" lead to ME/CFS, maybe people should respect their views rather then play down their lives with "everyone gets stress". No one is going to convince me otherwise that that wasnt a risk factor in me developing ME.

 

[taniaaust1]

Much the same can be said of parents, @charles shepherd . But parents are not more likely to develop ME/CFS - at least, not that I am aware.

Parents dont have the same kind of daily exposure to bacterias and viruses as a dr or nurse has, they are just usually in contact with kids, not with hundreds of people who are already sick.

 

[Gingergrrl]

This is a question where Jonathan is in a far better position to give an informed answer/opinion!

Thank you and it probably is a better question for Dr. Edwards! What I was trying to assess is if the risks from RTX in the experimental ME/CFS studies (PML, other viruses, etc) in which subjects are not necessarily screened for autoimmune subgroups are viewed as equal to the risks of PML/viruses in well-established autoimmune protocols (not for ME/CFS) in which RTX is only given two times total at one week apart.

I believe in the ME/CFS studies, patients receive RTX 4-5 times but I could be very wrong on this. Am trying to figure out a way to ask the question clearer and am curious b/c if I do RTX in future, it will be the autoimmune protocol vs. ME/CFS protocol. Thanks again for all the feedback.

 

[Hip]

The difference is that "behavior" - instead of sickness attributes or characteristics or manifestations - opens wide the door for psychs. "Behavior" is their playground.

Why not just say 'symptoms'? Behaviour suggests a willful action

Because the whole point of sickness behavior is that it is a behavior. If you don't understand that, then you don't understand the term you are discussing.

 

[duncan]

I understand tautology.

I understand the usurping of idiom for purposes of branding.

I understand the harm the terms can render, and the leverage they gift to a gang we don't want messing in our backyard. I know a cavalier approach to their use is like playing dice with the devil.

There is no good reason to indulge in "sickness behavior-speak". There are many good reasons not to.

So. Just. Don't. Do. It.

 

[Hip]

@duncan
What a waffly response! Go and find out a bit about sickness behavior, and then you will appreciate why it was so named. And try to understand that not every psychological-sounding term is out to get ME/CFS patients!

 

[Valentijn]

Go and find out a bit about sickness behavior, and then you will appreciate why it was so named.

I dare say that most of us already know what it means, and put the effort into finding out.

But until you can find a way to teach the rest of the world (including non-doctors) the difference between "sickness behavior" and "playing sick", or between "anorexia" and "I'm choosing not to eat because I feel compelled to look thin", those words are a minefield.

I'm not offended by their use, but they give the wrong impression to a lot of people. And we have more than enough wrong impressions surrounding ME already. Why not just step around the minefield by using different terminology which is less loaded?

 

[Kati]

I dare say that most of us already know what it means, and put the effort into finding out.

But until you can find a way to teach the rest of the world (including non-doctors) the difference between "sickness behavior" and "playing sick", or between "anorexia" and "I'm choosing not to eat because I feel compelled to look thin", those words are a minefield.

I'm not offended by their use, but they give the wrong impression to a lot of people. And we have more than enough wrong impressions surrounding ME already. Why not just step around the minefield by using different terminology which is less loaded?

Be the change sums it all for me.

Terminology is part of why we are (still) stuck in no man's land.

 

[charles shepherd]

that's excellent, I dont think Ive ever seen such a good list. thanks to those who got that together.

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.

 

[AndyPR]

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

Quick question on this point. Is the "Access to a specialist doctor for .... 12 months" something that should be happening already for every patient in the UK? Asking as I never came close to seeing anybody like that - had one appointment with a ME/CFS clinic where I was told that they couldn't do anything more for me than I was doing (or not doing) already and shown the door.

 

[Large Donner]

I feel like this post is taking it too far, of cause he doesnt know, if he knew of others coming down with it too from this patient and getting ME as well, Im sure he probably would of said.

That's the whole point.

 

[charles shepherd]

Quick question on this point. Is the "Access to a specialist doctor for .... 12 months" something that should be happening already for every patient in the UK? Asking as I never came close to seeing anybody like that - had one appointment with a ME/CFS clinic where I was told that they couldn't do anything more for me than I was doing (or not doing) already and shown the door.

Andy

Simple answer is no

This is what patients said they want at the Sussex meeting

My personal view is that (to be realistic in the current situation regarding availability of trained staff and funding for hospital based services) people with ME/CFS should have on-going access to a specialist physician if required following their initial assessment/appointment

Most of the specialist ME/CFS referral services here in the UK provide the first consultatation with a doctor (who may be a physician or a psychiatrist), or another another health professional (eg psychologist, OT, physiotherapist)

After that there are a number of routes once the diagnosis has been confirmed and any investigations or treatments have been agreed and arranged:

a Referral back to GP and prmary care - as happened in your case

b Continuing care under a multidisciplinary team - which can just mean CBT and/or GET

c Continuing care by the specialist physician (unusual)

The MEA position is that NHS run specialist referral services for ME/CFS should be

1 physician led - does not matter which -olgy. The important point here is having a sympathetic, conscientious, open-minded physician with expertise and genuine interest in ME/CFS

2 multidisciplinary - with access to a range of health professionals, as required

3 providing on-going care

4 providing suitable facilities and expertise for both children and adolescents and people with severe ME/CFS (which means providing dedicated in patient facilities and a domicilary/home visiting component)

 

[charles shepherd]

That's the whole point.

A s reported previously in this discussion:

I cannot recall anyone else in the hospital - staff or patients - catching chickenpox from this patient

Remember, chickenpox in adults is fairly uncommon - partly because many adults have caught it as a child (which I did not)

But when chickenpox does occur in adults it tends to be more severe than in children and can lead to more serious complications, including encephalitis

At the time, as I say, I was working a normal 35 - 40 hour week, as well as being on call every other night and weekend - which normally involved working late into the evening and then having to return to the ward or casualty several times during the night

Fortunately, this sort of crazy rota no longer happens but it was a form of on-going excessive physical and mental stress

Having seen a vast number of people with ME/CFS over the past 30+ years, and gone into their medical histories in considerable detail, my impression is that physical and/or mental stress can SOMETIMES be a CONTRIBUTORY FACTOR (i.e. NOt the actual cause) in the development of ME/CFS

Please note that I am not saying that stress causes ME/CFS - just that is in many other medical conditions stress can sometimes PLAY A ROLE in predisposing to, triggering, exacerbating and maintaining an illness

As far as health workers today are concerned, I know a considerable number of doctors and nurses who have developed ME/CFS and whilst not backed up by any epidemiological evidence my gut feeling is that there is an increased incidence of ME/CFS amongst health workers (and teachers as well)

 

[AndyPR]

@charles shepherd Thank you very much for the explanation/clarification.

 

[Hutan]

Thanks @charles shepherd for the clarification.

physical and/or mental stress can SOMETIMES be a CONTRIBUTORY FACTOR (i.e. NOt the actual cause) in the development of ME/CFS

Please note that I am not saying that stress causes ME/CFS - just that is in many other medical conditions stress can sometimes PLAY A ROLE in predisposing to, triggering, exacerbating and maintaining an illness

To be clear, I don't think much of the criticism in this thread on this point was directed at you or this kind of view. Stress is a very wide term and of course a stressed organism is more likely to become diseased than an unstressed organism, all other things being equal.

The criticism was of Dr Bansal's reported views - where three of the six factors he selected as being key to the perpetuation of ME/CFS essentially seemed to equate, in his mind, to stress. Stress is not sufficient as a sole or even important perpetuating (or causal) factor. Focusing on it is therefore a distraction from the areas where research is needed and contributes to the stigmatisation of patients.

 

[Wolfiness]

a) The whole defensiveness round stress or neuroticism or mental illness means patients won't participate in studies and questionnaires asking them about it even when those studies are seeking to disprove direct causation, and is, again, part of the self-perpetuating harm caused by the psychiatric lobby and the outright trauma caused when victims of any kind aren't believed.

b) Why aren't we suing the NHS or the Department of Health for breach of its duty of care? This is an ongoing national injustice in the UK, causing untold suffering, showing no sign of stopping, dwarfing even the Hillsborough and Savile scandals, and like them consists of people in power ignoring, disbelieving and denigrating victims because it is cheaper and easier to do so and also of course by now will mean admitting fault.

I didn't used to be militant about this. It's a fact of life that justice is always playing catchup because establishments and paradigms move slowly, but the fact that things are better in other countries means it doesn't *have* to be so bad. My own guess is that nothing will change until the retirement of the senior members of the psychiatric lobby, but we have to have built up a force for change by that time so that they can't simply hand on the baton to their juniors. It's not just about reform any more. It's about vindication, and I think it's reasonable to want that.

 

[charles shepherd]

a) The whole defensiveness round stress or neuroticism or mental illness means patients won't participate in studies and questionnaires asking them about it even when those studies are seeking to disprove direct causation, and is, again, part of the self-perpetuating harm caused by the psychiatric lobby and the outright trauma caused when victims of any kind aren't believed.

b) Why aren't we suing the NHS or the Department of Health for breach of its duty of care? This is an ongoing national injustice in the UK, causing untold suffering, showing no sign of stopping, dwarfing even the Hillsborough and Savile scandals, and like them consists of people in power ignoring, disbelieving and denigrating victims because it is cheaper and easier to do so and also of course by now will mean admitting fault.

I didn't used to be militant about this. It's a fact of life that justice is always playing catchup because establishments and paradigms move slowly, but the fact that things are better in other countries means it doesn't *have* to be so bad. My own guess is that nothing will change until the retirement of the senior members of the psychiatric lobby, but we have to have built up a force for change by that time so that they can't simply hand on the baton to their juniors. It's not just about reform any more. It's about vindication, and I think it's reasonable to want that.

One simple reason why nobody (individuals or charities) is 'suing the NHS or Department of Health for breach of duty of care' is that (1) the legal fees to M'learned friends would be enormous and (2) the chances of winning a case like this - and I assume you are wanting to argue that the NICE guideline on the diagnosis and management of ME/CFS and the specialist NHS referral services which make use of the NICE guideline in varying degrees are at fault here - are extremely remote

 

[Hip]

I'm not offended by their use, but they give the wrong impression to a lot of people. And we have more than enough wrong impressions surrounding ME already. Why not just step around the minefield by using different terminology which is less loaded?

I agree that when used in the context of ME/CFS, there may be a risk that the term sickness behavior inadvertently reinforces erroneous views of ME/CFS, such as the view that ME/CFS is a feigned illness put on by the patient (a view sometimes held by some none-too-bright sections of the general public).

In order to try to counter this risk, when I use the term sickness behavior, I sometimes initially refer to it as the sickness behavior response, to underline the fact that sickness behavior is a built-in response automatically triggered in human beings and animals when they catch an infection.

But let's not start thinking that the application of the sickness behavior concept to ME/CFS is some ploy to portray ME/CFS as an "all in the mind" condition. It is not. In fact it's the very opposite, as it links ME/CFS to infections.

Sickness behavior has been studied completely independently of ME/CFS. So as a terminology, it is nothing to do with ME/CFS, and unfortunately it is not really something that is likely going to be changed because of the needs of ME/CFS patients.

Sickness behavior has only recently been applied to ME/CFS as a result of Michael VanElzakker's vagus nerve infection theory of ME/CFS, which posits that a chronic infection of the vagus nerve might persistently activate the sickness behavior response, and thereby cause many of the symptoms of ME/CFS.

I like the fact that the sickness behavior response has been applied to trying to understand ME/CFS, because this underlines the possibility that ME/CFS may well be caused by a chronic infection.