UK Study - Pediatric CFS

alex3619

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Hi Dolphin

I don't recall seeing this study, it is also much more recent - and more advanced. If you can get hold of a full copy, I bet it cites the earlier study. It is also possible that Vance is connected to the earlier study, for all I know he was in the study but if so it may have been before I learnt to recognize his work. Bye, Alex

Are you thinking of this study?
Vance is originally from N. Ireland but hasn't lived there since the end of school (or was it college?) as far as I know (i.e. many decades ago).
If there is an Irish study I'm unaware of I'd be very interesting in knowing about it.
PS I looked at Vance's paper and didn't find an earlier reference. The Irish study might have been in the 90s and so is not well indexed. I am fairly sure it was in a minor journal - it struck me as unusual as it was the only time I ever saw an Irish study. Vance's study is much more advanced, the original study looked only at the physical properties, not the biochemisty. Alex
 

anciendaze

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This information about oxidative stress was known to researchers years ago, but no one acted upon it.

6 positive XMRV/MULV studies later and the tide is turning.

Infected babies and children who become adults with ME/CFS who become the laughing stock of the medical profession and blamed for their illness (some who commit suicide).

Is no laughing matter....
While we're on the subject of pediatric ME, does anyone still remember that David Bell started reporting the illness in children, including some of these same immune abnormalities, in 1985?
 

pictureofhealth

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Just wondering - due to the lack of negative comment from the UK SMC on this new study/paper (thank goodness) - do you think they are all away in the US at the XMRV Conference gemming up on the real science and planning their next dastardly counter move? (snicker)
 

anciendaze

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I think the UK news strategy is becoming clear. This disease (ME) was discovered by solid British researchers back in the 1950s and nothing of importance happened in the field between then and now.
 

Dolphin

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PS I looked at Vance's paper and didn't find an earlier reference. The Irish study might have been in the 90s and so is not well indexed. I am fairly sure it was in a minor journal - it struck me as unusual as it was the only time I ever saw an Irish study. Vance's study is much more advanced, the original study looked only at the physical properties, not the biochemisty. Alex
Thanks for that.

I regularly say that there are no biomedical studies that we are aware of that were done in the Rep. of Ireland in the last 15 years so if you do ever find anything, for that and other reasons, let me know.
 

Hope123

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In one of the British news articles, one of the study authors was stated that they had actually discovered these findings in adults first and then, because of how sick the kids they were coming across were, decided to do the formal study in kids. If someone knows anything further about the findings in adults, please post.
 

Marco

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In one of the British news articles, one of the study authors was stated that they had actually discovered these findings in adults first and then, because of how sick the kids they were coming across were, decided to do the formal study in kids. If someone knows anything further about the findings in adults, please post.
Hi Hope

This is from 2008. There may be earlier studies in the references or other follow-ups :


http://www.clinsci.org/cs/114/0561/cs1140561.htm
 

Dolphin

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In one of the British news articles, one of the study authors was stated that they had actually discovered these findings in adults first and then, because of how sick the kids they were coming across were, decided to do the formal study in kids. If someone knows anything further about the findings in adults, please post.
There was also this study:
http://www.meresearch.org.uk/research/projects/neutrophil.html
"Increased neutrophil apoptosis in chronic fatigue syndrome" (2004)

Vance Spence PhD, the man who was largely responsible for ME Research UK (formerly MERGE) being set up is a vascular scientist who had to retire because of M.E. (judging by a PubMed search for "spence va"[au] he has co-authored 52 PubMed-listed papers)
They have done a lot of research in the area and done it quite cheaply (they initially (early- to mid-2000s) had a budget cap of 30,000 (=US$46,200) and a lot of their studies were 10,000-20,000. They are funding studies with other researchers in other area that cost a bit more now.
A lot/most people in the UK have great respect for them and what they do.

They have a lot of interesting information on the website http://www.meresearch.org.uk/index.html - research section: http://www.meresearch.org.uk/research/index.html .
 

pictureofhealth

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ME Research UK - adult research papers

Hello - I'm probably doubling up on Marco and Dolphin's efforts here.

I typed 'Neutrophil Apoptosis' into the search engine on the ME Research UK 'Research' link - and the following list of articles/documents/papers etc came up:

http://www.meresearch.org.uk/CGI_BIN/search/search.pl?Terms=neutrophil+apoptosis

It includes neutrophil apoptosis and vascular stiffness and oxidative stress, in adults.
 
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I'd like to see the Pediatric Viral Titer Report/findings. Who tested positive for EBV, HHV-6A, CMV and co-infection such as Micoplasma, Lymes, Babesia, Borrelia and Chlamydia P? Theses are all scientifically proven to be linked with CFS. I vote to get out of the dark ages and move forward with viable scientific data and treatment. I think it is time for Political Action and Debates, Ad campaigns and Political, medical and social awareness. Enough is Enough. These Children need advanced and progressive treatment NOW.
 

Mithriel

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And don't forgert enteroviruses. The epidemics were associated with polio and it was shown in the eighties that patients had very high titres to Coxsackie B. The VP1 test showed enteroviral particles in muscle heart and brain tissue.

The US researchers have always put too much emphasis on EBV and it often seems like they have no knowledge of the original research that was done especially since it was done when there was no confusion of cohorts, everyone had PEM and had the same illness.

I think this study slipped in under the radar of the SMC. Sick kids always make a good story so it got fairly wide coverage. The adult studies were not so well reported.

The research coming from ME Research UK is solid, compelling science. A donation to them is money well spent.

Mithriel
 

Dolphin

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I'd like to see the Pediatric Viral Titer Report/findings. Who tested positive for EBV, HHV-6A, CMV and co-infection such as Micoplasma, Lymes, Babesia, Borrelia and Chlamydia P?
They didn't test for these.

This was a cheap study by US standards. I just looked up details: it was due to cost 42,000 (US$64,460).

This includes testing 48 individuals along with all the other costs involved in getting research done.

You can't test for all those things on that sort of budget.

If they had more money, they would be willing to test for more.

But so many people with this illness spend thousands on speculative treatments and don't give anything to research or try to fund-raise (or persuade family members to donate or fund-raise). So the amount of money available for research is small.

The (UK) Medical Research Council has never approved any grants for biomedical research.
 

Dolphin

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Dolphin[ Thanks Shannah. Have to admit said:
http://www.meresearch.org.uk/researc.../children.html[/url]
In this context 'derived variables' usually means self-reports of symptoms, as opposed to biochemical markers.

Jenny
Ok. Looked at the full paper and the bit about the derived variables in the abstract:
Arterial stiffness variables did not differ significantly between groups (mean augmentation index, −0.57% vs −0.47%,P=.09); however, the derived variables significantly correlated with total (r=0.543, P=.02) and low-density lipoprotein (r=0.631,P=.004) cholesterol in patients with CFS/ME but not in controls.
refers to:
In the CFS/ME group, AIx normalized for
a heart rate of 75 bpm significantly correlated with total
(r=0.543, P=.02) and LDL (r=0.631, P=.004) cholesterol
levels. The reflected wave was negatively correlated
with total (r=−0.489, P=.03) and LDL (r=−0.532, P=.02)
cholesterol levels, suggesting a greater pulse wave velocity
with increasing total and LDL cholesterol levels.