MEA: Make M.E. Better campaign

[trishrhymes]

I hope the researchers will work in close touch with Naviaux and with the Melbourne team.

 

[Sasha]

Just reading the MEA Newsletter, which includes more on this, and a quote (which I hadn't previously seen) from Dr Karl Morten, the lead investigator:

I am 52 years old and have been looking for a clinical problem in which I can invest the last ten to 15 years of my research career to really make a difference. It would be fantastic if that was to make a difference to the lives of ME patients worldwide.

Impressive attitude!

Did you say you were going to get Dr Morten to do a blog or a Q&A or something, @charles shepherd?

Donation link again: https://www.justgiving.com/campaigns/charity/meassociation/makemebetter

 

[charles shepherd]

Just reading the MEA Newsletter, which includes more on this, and a quote (which I hadn't previously seen) from Dr Karl Morten, the lead investigator:



Impressive attitude!

Did you say you were going to get Dr Morten to do a blog or a Q&A or something, @charles shepherd?

Donation link again: https://www.justgiving.com/campaigns/charity/meassociation/makemebetter

Not sure about a blog from Karl (I will ask!) but he will be providing some further information on the research

 

[BurnA]

Not sure about a blog from Karl (I will ask!) but he will be providing some further information on the research

This sounds like really good research - I think it needs to be promoted and publicised as much as possible. Blogs, etc are always welcome.

 

[charles shepherd]

This sounds like really good research - I think it needs to be promoted and publicised as much as possible. Blogs, etc are always welcome.

It's on my 'to do' list for next week before I take a few days holiday!

We have now raised almost £10,000 for Karl (who is a really nice doc) et al in Oxford in just over a week >>

https://www.justgiving.com/campaigns/charity/meassociation/makemebetter

 

[Sasha]

Fund stands at £28,526 now, with a goal of £50,000, according to MEA Facebook.

Keep those donations coming!

Interesting article here about the guy who will be the admin assistant on the study, who has ME (as does his sister):

http://www.meassociation.org.uk/201...-has-got-personal-for-jamie-25-november-2016/

 

[Sasha]

Just had an email from the MEA saying that the fund now stands at 85% of the £50,000 target - very good!

 

[charles shepherd]

We have just reached our target of £50,000 - well in advance of the deadline

So a big thank you to everyone who has donated to this MEA appeal to set up the first UK ME/CFS research study involving metabolomics

We are keeping the Appeal open in the run up to Christmas and I am discussing with Karl Morten and the team at Oxford how any extra funding could be used to increase the value of the existing proposal

MEA Just Giving page:

https://www.justgiving.com/campaigns/charity/meassociation/makemebetter

 

[Sasha]

Very pleased to hear that, @charles shepherd!

When will the study be starting?

 

[charles shepherd]

Very pleased to hear that, @charles shepherd!

When will the study be starting?

I know that Karl Morten is very keen to get started early in the New Year

My current intention is to meet with him in early January (when we will know how much money is in the bank) to look at the protocol and sort out the contractual arrangements

CS

 

[charles shepherd]

10pm Friday 9th:

Just been speaking to Dr Karl Morten in Oxford to fix up a meeting in January

He would also like to thank everyone who has donated to this research appeal

The pot has now reached £53,000!

 

[AndyPR]

Research – at least research into ME – it seems, is like buses. You wait years and then five come along at once.

There’s Fluge & Mella (2017); Naviaux (2016); Yamano et al (2016); Lawson (2016). And last, but not least, Ciriega et al (2016).

“There is so much science coming out now, globally,” says Dr Karl Morten (pictured), the man tasked with leading a team of researchers in a new study, funded by the ME Association’s Christmas Appeal.

“It makes you think: ‘what shall we do?’. Is there one of these studies that’s worth following up on? If there is, which way shall we take it? And how?”

In October, when we first spoke about the appeal launch, he was quietly upbeat – chatting cautiously about being 52 and ‘looking for a clinical problem which I can invest the last ten to 15 years of my research career to really make a difference’.

Now it’s sounding more like fighting talk; making Oxford a centre for global research into ME; pulling in a further £300,000 for more studies and other scientific avenues that he and the team are hoping to explore – more of which later.

http://www.meassociation.org.uk/201...then-five-come-along-at-once-2-february-2017/

 

[Barry53]

That control group is critical. A key component of such studies is to involve other fatigue groups who do not have ME/CFS. Being able to identify which biomarkers are linked to deconditioning is crucial in trying to understand the molecular basis of ME/CFS.

I imagine a key point here is that anyone with ME will also be deconditioned (their situation does not exactly allow them to stay in good condition!), and the really clever trick will be to distinguish between biomarkers relating to their inevitable deconditioning, versus biomarkers uniquely identifying their ME. That would be one helluva step forward.

 

[Artstu]

I imagine a key point here is that anyone with ME will also be deconditioned (their situation does not exactly allow them to stay in good condition!), and the really clever trick will be to distinguish between biomarkers relating to their inevitable deconditioning, versus biomarkers uniquely identifying their ME. That would be one helluva step forward.

I would say there are exceptions to that, I'm certainly not deconditioned.
I have seen research recently that dismissed their findings relating to PWME as simply a sign of being deconditioned, but they did not have a deconditioned control group to compare the results with.

 

[RogerBlack]

Deconditioning is bullshit, and an utterly uneducated hypothesis. (at least for me)
In order for deconditioning to be meaningful, the physiological normal response to exercise has to be an additional limit on people with ME.
I can always - if not having a particularly 'wobbly' day - do enough without facing normal physiological responses (delayed onset muscle soreness, ...) to trigger long-lasting PEM.

Normal muscle response to deconditioning and overwork is very much different from diffuse general muscle pain.
I would really like to see a study on deconditioning nailing this stupid myth.

I'm not sure any term in ME/CFS has been more damaging.
Deconditioning provides a handy term for doctors to latch onto, and think 'Oh - I've been a bit sore after exercise' and then assume with help from the papers that that is basically all PEM is, when exercise physiologists would point and laugh at the use of the term this way.
'Overtraining' - after 'deconditioning' does not cause cognitive issues, or muscle soreness on non-exercised muscles, or orthostatic intollerance, or any of the wide battery of symptoms PEM causes for many.

It is a truly wonderful term - as it implies so much that goes to their narrative.
Depressed people make too much of things.
They just need to 'snap out of it'.
If they just persist with exercise, and reorder their thinking, this 'Post exertional malaise' will be realised to be normal response to exercise.

 

[trishrhymes]

I completely agree that deconditioning is neither the cause nor the perpetuating factor in ME.

In my case, I started with over a decade of mild ME where I continued to work as a part time teacher and run a home and raise a family, mostly as a single parent. While I had to give up hiking, tap dancing and using a vacuum cleaner, I was as fit as most of my colleagues, but I was repeatedly hitting my limit and tipping over into PEM, having to take a week off work to recover, using all the half term and holiday breaks to recuperate, often going to bed nearly weeping from fatigue and pain, and falling in and out of push crash cycles.

Had my metabolites been tested at that stage, I think valid comparisons could have been made with healthy adults with similar activity levels.

However, for the last decade the story is very different. After all those years of push-crashing, my health collapsed, and I had to retire. My health has continued to decline, and I am now house bound, and, need to lie down for 90% of the time.

As a result, my muscles have become weaker, so I would say, as a result of years of worsening ME, I have also become deconditioned.

If my metabolites were tested now, I think they would need to be compared with a deconditioned healthy adult, so any metabolic effects of deconditioning could be separated out from the metabolic effects of the ME.

I therefore think there is a valid point, particularly if long term severely effected sufferers are being studied, to use as a control group, healthy people deconditioned for other reasons, for example perhaps those who are fairly immobile due to bad fractures or partial paralysis, or by lifestyle choice.

Otherwise, I think there could be a valid argument that all that is being measured is the result of deconditioning.

Perhaps a really good study would compare:

Active healthy controls
Deconditioned healthy controls
Mildly effected active and not decondtioned ME sufferers
Severely effected, newly ill and therefore not yet deconditioned ME sufferers.
Severely effected deconditioned long term ME sufferers
Sufferers from other fatiguing illnesses such as MS.

 

[trishrhymes]

While I had to give up hiking, tap dancing and using a vacuum cleaner,

Just had a bizzarre mental image of myself doing all 3 activities at once.

If only...

 

[Barry53]

Deconditioning is bullshit, and an utterly uneducated hypothesis. (at least for me)

Either you completely misunderstand what I meant, and/or just being offensive. For anyone suggesting deconditioning (which I take to mean being "out of shape") is the primary issue for MECFS sufferers, is of course bullshit - I 100% agree with you on that. But to suggest people with ME/CFS are not also out of shape has to also be complete rubbish. Two completely different issues, but not mutually exclusive. It is a separate but consequential condition. How can someone who is bedridden, for instance, keep themselves in shape?! Wiggle their toes a bit harder? Staying in reasonable shape takes routine exertion, the very thing ME/CFS sufferers cannot do, no matter how desperately they wish they could.

If a person with ME/CFS had some miracle overnight cure (if only!), they would not be able to suddenly jump up the next day and do a 10-mile hike across the South Downs (something my wife would dearly love to be able to do again). Why not? Sort of obvious really.

The point I was trying to make earlier is that because ME sufferers will have both issues, being able to distinguish biomarkers for mere deconditioning, from biomarkers identify ME/CFS, seems like a very good idea. And maybe help put a stop once and for all to the stupid "bar stewards" who perpetuate the notion they are one and the same thing.

One of the biggest confusions/conflations (in many walks of life, but especially in ME/CFS) is assuming that something must be This Or That, and exclude the possibility of This And That. Then when someone suggests the existence of That, people assume they are suggesting it cannot therefore also be This.

I completely agree that deconditioning is neither the cause nor the perpetuating factor in ME.

I completely and utterly agree with what you say here, and was not for a second suggesting otherwise. In fact I am endeavouring to say the opposite.

 

[Barry53]

I would say there are exceptions to that, I'm certainly not deconditioned.

I appreciate what you are saying, but I am interested to understand. How can you tell you are not additionally deconditioned, as well as having the fundamental ME/CFS problems? I do not see (and by that I really do mean I am not understanding, not that I obstinately disbelieve ) how anyone could know they are not consequentially deconditioned, whilst suffering from ME/CFS. I would have thought one masks the other.

 

[A.B.]

Either you completely misunderstand what I meant, and/or just being offensive. For anyone suggesting deconditioning (which I take to mean being "out of shape")

Deconditioning is not clearly defined, so it will mean different things to different people.

Most patients are not bedbound and walk around and do some stuff. If deconditioned is defined to mean the lack of fitness of a certain severity seen in patients that are bedridden then most patients are not deconditioned as per this definition.

Of course having this illness doesn't magically make one immune to the effects of reduced activity. It seems however that in ambulant patients (for example PACe trial participants) that there is very little to be gained from exercising.