ME/CFS Research Newcastle UK - Team Newton

[Bob]

All of Action for ME's videos can be found here, in case it's any help:
http://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg/feed

 

[Battery Muncher]

@Bob

Thanks for that Bob, I'll try and look at the second presentation over the next couple of days.

 

[Firestormm]

18 November 2013

"Thanks to Simon. It is always important for others to replicate your work - this adds real credibility to our observation that almost 20% of those diagnosed with CFS have POTS. This makes it even more important for assessment of heart rate in response to be included in the clinical assessment of anyone with CFS."

That refers to 'our' Simon who posted a study that appears to replicate the work from Newton's team. The thread about this replication can be read/found here.

 

[Battery Muncher]

I've watched the second Newton video. Very interesting and exciting! Unfortunately I am feeling absolutely terrible right now, so I can't put a full write up (yet) though I hope to do so by the end of December....

 

[Firestormm]

https://www.facebook.com/permalink....53048485&id=526359017390431&notif_t=notify_me
Today we did some filming for a Dutch charity who are over to interview PRof Leonard Jason. We responded to lots of questions that will be uploaded onto the internet over the coming months. Tomorrow is the Medineo conference so ewe are looking forward to meeting the other speakers and having the opportunity to speak to an audience of primary care colleagues.

The Dutch film crew have also interviewed Dr Charles Shepherd and others. I think there will be several short films produced, and published in the New Year.

The Medineo conference in on today.

 

[maryb]

[quote="Battery Muncher,
-she basically says that her PhD is about looking at muscle dysfunction in CFS (+ developing a drug pre-testing system - not sure what that means).

-Aims to be able to reverse muscular acidosis with a drug tolerable by the human body. (I assume she means the excess build up of lactic acid etc during activity)
So patients can take a drug in tablet form and reduce the symptoms of muscular acidosis when they exercise.
-Research is going in the right direction and starting to get the attention it deserves


Dear god is it me - (and no I haven't watched the vid)
is this what some people think is brilliant?!!!!
a drug to make exercise more tolerable for ME patients, have I got it wrong. shoot me now if I haven't.

 

[Firestormm]

Recent presentation from Julia at AfME conference on 8 November 2013:

 

[Firestormm]

If you don't listen to anything else today - and want a bit of a boost - then listen to Julia above

Goooo Team Newton!!

 

[maryb]

I'll pass on that.

 

[lansbergen]

Watched Gina's presentation and as I expected she is looking at superoxide.

 

[Ruthie24]

@Firestormm Thanks for the boost! Very exciting to see such positive research being done. Was at a mitochondrial disease lecture recently and sounds like some of the same things were being discussed there as well so maybe there really are some answers coming up in the future for us.

By "exercise" Julia Newton specifically said they were stimulating the muscle cells at a level that would replicate what ME/CFS patients would do in daily activity. Personally I would be thrilled if they came up with something that would relieve the muscle fatigue and pain that occurs when I try to function as that is one of my biggest limiting factors.

If they could figure a way to let me exercise again, I think that would be brilliant! Exercise was one of the things in my past life that I used to help deal with a lot of the other issues I had. If I could exercise again, I would be a very happy person.

 

[Tuha]

Does it mean that we are exhausted because of muscle fatigue? I think these muscle problems is exactly what I have.
I am still in relative good condition. I cannot do sport but I am able to walk 1 hour and I am walking every day. My muscles dont hurt but i have a strange feeling in my muscles something like what you feel if you didnt run 1 year and then you run 10 kilometers - you have that lactic acid. My muscles are weak, they are trembeling and I get muscle cramps easily. Very interesting this research

 

[Firestormm]

@Firestormm Thanks for the boost! Very exciting to see such positive research being done. Was at a mitochondrial disease lecture recently and sounds like some of the same things were being discussed there as well so maybe there really are some answers coming up in the future for us.

By "exercise" Julia Newton specifically said they were stimulating the muscle cells at a level that would replicate what ME/CFS patients would do in daily activity. Personally I would be thrilled if they came up with something that would relieve the muscle fatigue and pain that occurs when I try to function as that is one of my biggest limiting factors.

If they could figure a way to let me exercise again, I think that would be brilliant! Exercise was one of the things in my past life that I used to help deal with a lot of the other issues I had. If I could exercise again, I would be a very happy person.

You are welcome

Yes it was great to hear that even 'exercising' the muscle cells at a level that is believe to stimulate 'daily' activity i.e. not exercising them to their limit, they found clear abnormalities compared to controls and not all of it related to acid production, build-up and an inability to disperse.

I might transcribe as I hadn't heard these results before - hopefully a paper will be forthcoming shortly. If they can come up with something - a pill - that helps remove this damned muscle pain I experience even when at rest i.e. after movement and use of legs and arms - then I shall be a happy bunny.

How Julia's work that she describes relates to the 'fatigue' in general I don't know. I can't remember if she covered that in this presentation to be honest (yesterday was a long time ago for me to recall!).

She did talk about glucose, and energy production by muscle cells, and IL6 and something else I forget, and how differences were demonstrated again compared to controls. Quite how this might be treated, or why it was caused, she didn't say, but they are working on it too I guess.

There had been no promotion of this talk so it was something of a pleasant surprise - and boost - to hear the long-awaited results.

A very nice way to round off the day and no mistake - but blimey she took her time getting to the results didn't she? I was champing at the bit!

Not everyone - as she said - has these problems with muscle pain, aches, during or after exercise and at rest. Indeed she felt it was another means of determining sub-groups.

Muscle pain/ache is one of the more traditional associations with ME of course and it's a right pain in the arse to live with!

Anyway, I'm delighted to hear some positive news about this one: because painkillers only ever take the edge off the symptoms and you definitely cannot exercise them away and neither are they the result of inactivity - as has now been proven

Replication is ever necessary but it's studies like these that will break the camel's back.

 

[Battery Muncher]

@maryb

Dear god is it me - (and no I haven't watched the vid)
is this what some people think is brilliant?!!!!
a drug to make exercise more tolerable for ME patients, have I got it wrong. shoot me now if I haven't.

Admittedly my knowledge of ME/CFS research is not great, as I had all but given up till the Rituximab news.

However, I don't really think that is what Rutherford is aiming to do. Or at least, I think the implications of her research go much deeper.

Basically, I don't know if I'm alone in this, but Post-Exertional malaise (PEM) is one of my biggest symptoms. For me it's what distinguishes ME/CFS from just "tiredness" or whatever, because there is a real physical impact when I exert myself in any way.

Exercise is one obvious example, but also things such as thinking (proper cognitive function needs LOADS of energy), reading (eye fatigue/ pain), listening to music etc etc. Socialising is impossible for me as I keep crashing, so I haven't actually had a proper conversation in years. Just holding down a part-time job is actually killing me.

Anyway, the point is that all these problems stem from PEM. If we can tackle PEM, then we can alleviate some of the worst symptoms of ME/CFS. And therefore regain back some of our lives (be able to hold down proper jobs etc). Whereas a cure might take decades to find.

So I don't think it's "just" about exercise. In fact, I think Team Newton are attacking the core of this illness.

Does this make sense? I don't know how well I am expressing myself here.

@lansbergen Interesting. I was thinking of whether to do a write up of this presentation or not. But if it's common knowledge, is it worth doing?

@Firestormm Thanks for digging up that talk. I'm looking forward to listening to it! Team Newton are doing really interesting work, from what I can see.

 

[maryb]

@Battery Muncher
well thank you so much for taking the time to explain your view. But I have to disagree, my symptoms are there regardless of PEM, many people with ME don't get PEM regularly because they are too sick to push themselves out of their energy envelope. Its different for you, working even part-time must put you into PEM regularly, and I sympathise so much for your situation.
I rest and rest, have as little stress as its possible to have. I walk about when I can and do what I can, my body tells me if its a 'no' day.
My symptoms maintain to the same degree though. I too am unable to read books etc. I manage small amounts of text on the computer screen presumably as its back-lit. Major cognitive issues, FM etc.

I have constant head pressure that a person without ME would scream with, MRI scan showed nothing even though I was in excrutiating pain whilst lying down in the scanner.

I value your thoughts and yes I hope something good for us will come from the research, I just can't get my head around what though.

 

[Firestormm]

@Battery Muncher

I also had time recently to listen to err... hang-on... forgot his name for a moment Komaroff's lecture delivered at the beginning of November. Nothing new, but he was reviewing progress that has been made in general and one thing he did mention that I wasn't aware of, and is connected to Newton's research perhaps, is lactic acid in the brain.

I'd have to find the paper/research he was referring to and probably wont get around to it any time soon, and the spinal fluid samples need closer study, but maybe there is a connection between the build-up of acid in the muscles - causing the aches and pains - and something similar occurring in the olde noggin. I doubt it but stranger things have happened

Here's the tread to his talk: http://forums.phoenixrising.me/inde...e-of-knowledge-mass-cfsids-me-fm-assoc.26901/

 

[lansbergen]

@lansbergen Interesting. I was thinking of whether to do a write up of this presentation or not. But if it's common knowledge, is it worth doing?/quote]

I think Gina's presentation is worth a write up.

 

[Firestormm]

@Battery Muncher If you do fancy having a go at writing up Gina's and/or Julia's presentations then I'd be happy to transcribe both talks perhaps if I have the time. But if you want to consider submitting a draft for an article then let me know and I can help with something for the New Year perhaps. Julia's paper is expected to be published soon i.e. before Xmas perhaps or in January maybe - I think it was submitted over the Summer.

 

[Firestormm]

Cort has done an interview with Julia I noticed. Published yesterday. I have yet to read it:

Dr. Newton Talks! On Reversing Acidification in the Muscles, Blood Vessels, Abnormal Stress Responses and Aging in Chronic Fatigue Syndrome

 

[Battery Muncher]

@maryb Thanks for your excellent response, and I'm starting to see your point of view. I still disagree slightly - I still see this research as very valuable - but I think I'll have to leave a proper response to the weekend!

@Firestormm

@Battery Muncher If you do fancy having a go at writing up Gina's and/or Julia's presentations then I'd be happy to transcribe both talks perhaps if I have the time. But if you want to consider submitting a draft for an article then let me know and I can help with something for the New Year perhaps. Julia's paper is expected to be published soon i.e. before Xmas perhaps or in January maybe - I think it was submitted over the Summer.

Thanks for this offer Firestormm. Normally I'd seriously consider doing this as I'm very excited about both, but I'm wary of committing myself to anything, especially at this time of the year (esp. increased work and family commitments)! I'll watch Newton's video and read her interview and see, but I think I'll have to give a provisional 'no'. Sorry!

PS: Thanks for putting me onto that Komaroff video. It sounds very interesting and as you say could link to cognitive dysfunction.

Just one thing. I'll need to check my notes, but the impression I got from Rutherford is that it is not only the build up of lactic acid that is the problem, but also the inability to kickstart the Kreb's (TCA) cycle.
That's how ATP energy is produced so possibly relevant