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

charles shepherd

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ME/CFS Research and Management meeting

reMEmber shine the spotlight on ME/CFS research and management | Dr Shepherd recalls highlights of Burgess Hill meeting | 14 May 2016


Thanks to everyone who came to this three-hour meeting in Burgess Hill, Sussex, on Saturday May 14. The meeting was organised by the Sussex-based ME/CFS charity ReMEmber and there was hardly a spare seat left in the room once we got started! There were presentations by consultant immunologist Dr Amolak Bansal (research) and ME Association medical adviser Dr Charles Shepherd (management).

This is a summary of key points on both research and management – especially those that relate to the way in which some of the current research findings on infection, immune system dysfunction, muscle/mitochondrial function, etc, link in to practical patient management. The summary also includes information from the meeting on the role of stress, activity management and drugs that may affect the underlying disease process in ME/CFS (e.g. antivirals, steroids and rituximab).

The meeting opened with Dr Bansal’s presentation on research.

This was followed by an excellent patient interaction section on what people want to have included in a hospital-based ME/CFS referral service in Sussex.

The final session was devoted to practical aspects of Management.

Full report here:

http://www.meassociation.org.uk/201...ghlights-of-burgess-hill-meeting-14-may-2016/
 

Hutan

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Thanks, it's an interesting read.

Dr Bansal’s presentation on research concentrated on what he regards as the six key factors that are involved in the perpetuation/maintenance of ME/CFS.

1 INFECTION
In our present state of knowledge, there is little evidence of specific viral infections acting as a perpetuating factors in ME/CFS.
However, there is a specific and subtle abnormality in a key part of the immune system involving what are called natural killer/NK cells (see section 2 on the immune system). This NK cell dysfunction results in a decreased ability to keep latent/dormant infections under control and the consequent reactivation of a latent infection such as Epstein Barr Virus (EBV) – the infection that causes glandular fever.

Most adults (around 90%) acquire glandular fever during childhood and adolescence. There is now good evidence from several research groups (e.g. Loebel et al: www.ncbi.nlm.nih.gov/pubmed/24454857) that this virus (which can remain dormant in the body after the initial infection) becomes reactivated in some people with ME/CFS, possibly as a result of the impaired NK cell activity. This viral reactivation then causes some of the on-going infective type symptoms such as recurrent sore throats etc.
I don't think I had understood that possible cause for the recurrent sore throats (and presumably sore glands) - both of which I get when I overdo things. In the first couple of years I had recurrent cold sores - as in one would have nearly healed when another one would come. A year on Valtrex seems to have quieted that down. I no longer take Valtrex and now hardly ever get cold sores.

2 IMMUNE SYSTEM DYSREGULATION
.....
Recent research also indicates that the level of a substance called perforin may be reduced in ME/CFS. Perforin is a pore-forming cytolytic protein found in the granules of cytotoxic T lymphocytes and NK cells. It acts at a cellular level to kill viruses that have infected cells.

3 MUSCLE ABNORMALITIES
There is now a significant amount of research to support a role for muscle/mitochondrial abnormalities in ME/CFS.
So far so good, Dr Bansal.
But from there on I started to feel uneasy. And then decidedly stressed, Dr Bansal, about your attitudes to stress as a causal and perpetuating factor.
 

charles shepherd

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Thanks, it's an interesting read.


I don't think I had understood that possible cause for the recurrent sore throats (and presumably sore glands) - both of which I get when I overdo things. In the first couple of years I had recurrent cold sores - as in one would have nearly healed when another one would come. A year on Valtrex seems to have quieted that down. I no longer take Valtrex and now hardly ever get cold sores.




So far so good, Dr Bansal.
But from there on I started to feel uneasy. And then decidedly stressed, Dr Bansal, about your attitudes to stress as a causal and perpetuating factor.

I ought to edit this sentence to say:

It has been suggested that viral reactivation could then be a cause of some of the infective type symptoms such as sore throats.

(Because this link is speculation in our present state of knowledge - not hard fact.)

If it is correct it probably helps to explain why antiviral treatment with drugs like valganciclovir do appear to be effective at reducing some of these symptoms in some patients. CS
 

Hutan

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To continue..

First is that muscle and muscular activity is an important source of endorphins – the body’s ‘feel good’ chemicals that also have pain-relieving properties. So lack of muscular activity in ME/CFS, and the consequent decreased production of endorphins, could play a role in pain production.

So, we feel pain because we aren't using our muscles.

Dr Bansal said that, although there were defects in the PACE trial, it did raise the issue of the beneficial affects of physical activity and exercise.
Splutter..

4 NEUROENDOCRINE (brain hormone) DYSFUNCTION AND STEROID RESISTANCE
Stress can affect the production of hormones in the body – especially the stress hormone, cortisol – through its effect on the hypothalamus and the hypothalamic-pituitary-adrenal axis (cortisol is produced in the adrenal glands).

5 ACUTE AND CHRONIC STRESS
Stress, both acute and chronic, can play an important role in ME/CFS because it has a direct effect on several of the factors involved in the perpetuation of symptoms – immune system dysfunction, neuroendocrine dysfunction and autonomic nervous system dysfunction in particular – as well as helping to maintain the sleep disturbance that occurs in ME/CFS.
...And a past history of chronic stress, which may be relevant in some people with ME/CFS, can make it more difficult for people to cope with a major stressor in the future. In the case of ME/CFS, this could therefore act as a predisposing factor when a major stressor (i.e. an infection) appears and triggers the illness.

More spluttering. I thought even the hardcore psychobabblers were admitting that PWME don't actually seem to have a history of more past trauma than anyone else.
 

Hutan

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And the last one for completeness..

6 UNREFRESHING/POOR QUALITY SLEEP
As already noted, any form of chronic stress, is going to have a direct effect on the quality of sleep and may therefore help to perpetuate any existing sleep problems – non restorative sleep; fragmented sleep, daytime sleeping – that are common in ME/CFS.
So, chronic stress again.
 

Hutan

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I should add that Charles Shepherd's section on management is useful and well informed as you would expect. But, in my hypervigilant stressed state, I had trouble with the following.

4 BALANCING ACTIVITY AND REST
Following on from the muscle research referred to by Dr Bansal, that muscle activity is involved in the production of both endorphins (which reduce pain) and BDNF (which helps with nervous system repair), we clearly need more research into finding the ways that people with ME/CFS can carry out some form of very flexible and gradually increasing physical activity that is going to harness the benefits of physical activity but is not going to induce post-exertional malaise/symptom exacerbations at the same time.

If I had more energy, I'd do more activity. Use the research funds on finding out why I don't have enough energy, - not fiddling around the edges making better stretching exercises.

I think I had better go visit @Valentijn's garden thread before bed so that my stress doesn't disturb my sleep.
 

charles shepherd

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RE STRESS

With regard to stress, two points that Amolak was making were that:

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

On a personal basis, I was working one of these dreadful 1 in 2 rotas (ie working every day and every other night) that docs used to have to do in a very busy hospital

So I think that undue physical and mental stress (which I didn't actually have any obvious problem with at the time) may have acted as a co-factor when an episode of chickenpox (which I caught from a patient) tiggeed my own ME

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 going to have a negative impact on any possible recovery proces in ME/CFS

Nobody was saying that ME/CFS is another manifestation of a stressful illness, or is a stress related illness. But the role of stress and immune system stressors - acute and chronic - on the body cannot be ignored in ME/CFS and where present they do need to be addressed in the overall management of someone with ME/CFS
 

charles shepherd

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I should add that Charles Shepherd's section on management is useful and well informed as you would expect. But, in my hypervigilant stressed state, I had trouble with the following.



If I had more energy, I'd do more activity. Use the research funds on finding out why I don't have enough energy, - not fiddling around the edges making better stretching exercises.

I think I had better go visit @Valentijn's garden thread before bed so that my stress doesn't disturb my sleep.

I would not agree that research into activity/energy management is just 'fiddling around the edges'

We need research into all aspects of the underlying disease process in ME/CFS, as well as all aspects of management - including how to best deal with activity/energy management in relation to stage, severity and variability of the illness

In particular, we need research into one of the big unknowns relating to activity/energy management: i.e. what should doctors be advising patients to be doing in the very early stages (i.e. weeks) of a post infectious fatigue syndrome, or what appears to be ME/CFS, and is there any effective way (in relation to activity management) of reducing the risk of post infectious fatigue progressing into ME/CFS, or what may well already be ME/CFS becoming more severe and persistent
 

duncan

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Yeah, I'm thinking this is dangerous territory, and the "we need to continue to look at ALL possible factors" approach - although sounding nice - may be casting a blind eye to history and context.

Stress/trauma is fertile ground for the BPS school. We ignore this at our peril. And it IS likely irrelevant or secondary. It's life's debris and we all have it. The BPS school loves to cherry pick from that debris.

Increasing activity levels also dovetails with their platform. We know to learn our PEM thresholds, and to do this via pacing, etc. To ignore THAT could leave us in worse shape than we already are in.
 

charles shepherd

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Good points from the interactive session half way through:

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.
 

Hutan

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On a personal basis, I was working one of these dreadful 1 in 2 rotas (ie working every day and every other night) that docs used to have to do in a very busy hospital

So I think that undue physical and mental stress (which I didn't actually have any obvious problem with at the time) may have acted as a co-factor when an episode of chickenpox (which I caught from a patient) tiggeed my own ME

The thing is, with hindsight, just about anyone could identify stresses at any particular point in their life. Final year exams at secondary school; parents divorcing; study at university; demanding job with difficult co-workers; having a baby; having three kids under five and working; spouse with cancer; moving overseas; having your child die; training for the olympics; financial problems; divorce; and so on ....

Most people's lives are a series of challenges. But not everyone gets ME/CFS. So pointing to stress as a cause (as Dr Bansal does repeatedly) is not very helpful. (edited for spelling)
 
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skipskip30

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I would not agree that research into activity/energy management is just 'fiddling around the edges'

We need research into all aspects of the underlying disease process in ME/CFS, as well as all aspects of management - including how to best deal with activity/energy management in relation to stage, severity and variability of the illness

In particular, we need research into one of the big unknowns relating to activity/energy management: i.e. what should doctors be advising patients to be doing in the very early stages (i.e. weeks) of a post infectious fatigue syndrome, or what appears to be ME/CFS, and is there any effective way (in relation to activity management) of reducing the risk of post infectious fatigue progressing into ME/CFS, or what may well already be ME/CFS becoming more severe and persistent

As long as the research is fair and well designed without any spin or bias *cough* pace *cough* then I agree. Activity management has a huge effect on most of us.

Some of the things Hutan highlighted are worrying but that doesn't rule out future (sensible) studies of energy management for me.
 

Hutan

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I would not agree that research into activity/energy management is just 'fiddling around the edges'

We need research into all aspects of the underlying disease process in ME/CFS, as well as all aspects of management - including how to best deal with activity/energy management in relation to stage, severity and variability of the illness

In particular, we need research into one of the big unknowns relating to activity/energy management: i.e. what should doctors be advising patients to be doing in the very early stages (i.e. weeks) of a post infectious fatigue syndrome, or what appears to be ME/CFS, and is there any effective way (in relation to activity management) of reducing the risk of post infectious fatigue progressing into ME/CFS, or what may well already be ME/CFS becoming more severe and persistent

Well, what you wrote that prompted my comment was:

we clearly need more research into finding the ways that people with ME/CFS can carry out some form of very flexible and gradually increasing physical activity that is going to harness the benefits of physical activity but is not going to induce post-exertional malaise/symptom exacerbations

So, that was specifically about increasing physical activity, not pacing or energy management.

I remain of the view that the most important research right now is understanding what causes the disease. Until then and until we can accurately identify people that actually have the same disease, any studies on whether rest or activity changes the outcome of the illness is severely compromised. How can you possibly know if the population you are studying all has the same disease?
 

Sasha

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charles shepherd said:
we clearly need more research into finding the ways that people with ME/CFS can carry out some form of very flexible and gradually increasing physical activity that is going to harness the benefits of physical activity but is not going to induce post-exertional malaise/symptom exacerbations

I hope we're not nitpicking our way through your very useful material but I have a slight concern about the bolded text, in that it may be taken to imply that the sky's the limit, with being able to gradually increase physical activity; or indeed, that all PWME can gradually increase their activity at all.
 

msf

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This might be an unfair comment, Dr. Shepherd, but from the outside it does seem to me that the rational scientists and doctors who get involved in ME in the UK also have to be politicians, and speak like politicians.

For instance, I never hear anyone castigating PACE like Coyne does.
 

voner

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I would not agree that research into activity/energy management is just 'fiddling around the edges'

We need research into all aspects of the underlying disease process in ME/CFS, as well as all aspects of management - including how to best deal with activity/energy management in relation to stage, severity and variability of the illness

In particular, we need research into one of the big unknowns relating to activity/energy management: i.e. what should doctors be advising patients to be doing in the very early stages (i.e. weeks) of a post infectious fatigue syndrome, or what appears to be ME/CFS, and is there any effective way (in relation to activity management) of reducing the risk of post infectious fatigue progressing into ME/CFS, or what may well already be ME/CFS becoming more severe and persistent

an added agrument to Hutan's response:

Given the very limited amount of ME/CFS (or fibromyalgia for that matter) research money available, I would like those $ going into research for causative physical factors of the disease, not management of the disease or psychological related factors of the disease.
 

charles shepherd

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I hope we're not nitpicking our way through your very useful material but I have a slight concern about the bolded text, in that it may be taken to imply that the sky's the limit, with being able to gradually increase physical activity; or indeed, that all PWME can gradually increase their activity at all.

Perhaps I should have highlighted very flexible as well!

Seriously though, when it comes to activity/energy management, one place where we could start is by looking at what strategies people have used (successfully and not successfully) in the very early stages of ME/CFS - i.e. in the days, weeks, months following the onset of their ME/CFS

Most of my medical colleagues don't have a clue when it comes to advising people on activity/energy management when an infective episode has triggered some form of persisting post infectious fatigue, or the possibility that they may have developed ME/CFS

We really do need to be adding research into this crucial aspect of very early management into the ME/CFS research portfolio

And if anyone wants to approach the MEA Ramsay Research Fund with a sensible research proposal on activity/energy management in the very early stages of ME/CFS or a PVFS, it will be given very serious consideration
 

charles shepherd

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A lot has to do with the viral reactivation in my book, when my Parvo reactivates it hurts A LOT and in certain joints I can tell you the virus that is active based on the pain pattern (symptoms) . Always gets confirmed by labs.

Parvovirus and ME/CFS - an interesting sub-group?

From the Research (Infection) section in the MEA purple booklet (2016 edition):

In one study, parvovirus B-19 associated ME/CFS developed in 4-13% of symptomatically affected persons (Kerr et al 1996). In this group, elevated levels of tumour necrosis factor alpha and interferon gamma were reported – findings consistent with chronic immune activation (Kerr et al 2001). Administration of intravenous immunoglobulin was reported to be an effective form of treatment in some of these patients where it normalised cytokine dysregulation (Kerr et al 2003). But there has been a higher incidence of adverse effects in ME/CFS patients with conventional doses of intravenous immunoglobulin in other series – see section 7:4.10. For a systematic review of neurological aspects of parvovirus infection, see Barah et al 2014.