Medical Research Council Announces ME/CFS Research Projects Worth 1.6m

[Dolphin]

"Cytokines and the Symptoms of CFS" (CDC)

The CDC have previously spent some of the CFS budget on looking at the effects of interferon-alpha treatment.

Cytokines and the Symptoms of CFS (new article, December 2011)
http://www.cdc.gov/cfs/news/features/cytokines-and-cfs-symptoms.html

Association of Exaggerated HPA Axis Response to the Initial Injection of Interferon-Alpha with Development of Depression During Interferon-alpha Therapy
http://www.cdc.gov/cfs/publications/studies_of_causes/hpa_axis_response.html

Anterior Cingulated Activation and Error Processing During Interferon-alpha Treatment
http://www.cdc.gov/cfs/publications/studies_of_causes/anterior_cingulated_activation.html

Depressive Symptoms and Viral Clearance in Patients Receiving Interferon-a and Ribavirin for Hepatitic C
Brain, Behavior, and Immunity 2005;19:23-27.
http://www.cdc.gov/cfs/publications/studies_of_causes/depressive_viral.html

Interferon-alpha-induced Changes in Tryptophan Metabolism: Relationship to Depression and Paroxetine Treatment
Biological Psychiatry 2003;54:906-914.
http://www.cdc.gov/cfs/publications/studies_of_causes/tryptophan_metabolism.html

Neurobehavioral Effects of Interferon-A in Cancer Patients: Phenomenology and Paroxetine Responsiveness of Symptom Dimensions
Neuropsychopharmacology 26:643-652, 2002.
http://www.cdc.gov/cfs/publications/studies_of_causes/phenomenology_paroxetine.html

I just added this info to the thread on the Pariante award:
http://forums.phoenixrising.me/show...ersistent-fatigue-induced-by-interferon-alpha

 

[oceanblue]

The CDC have previously spent some of the CFS budget on looking at the effects of interferon-alpha treatment...

I just added this info to the thread on the Pariante award:
http://forums.phoenixrising.me/show...ersistent-fatigue-induced-by-interferon-alpha

I've posted very brief summaries of these studies and other related ones, as well as on the Pariente study itself here

 

[Firestormm]

Some more information and the reaction from Prof Julia Newton about her studies and the funding awarded:

Posted 8 February 2012: NHS CFS/ME Northern Clinical Network: http://blog.cfsmenorth.nhs.uk/other...gue-teams-win-1-6million-mrc-research-grants/

'It was with great excitement that I opened an e-mail on Monday afternoon that was addressed to me from the MRC. Receiving e-mails from funding bodies is very often associated with a sense of anxiety. What are you going to see when you open the e-mail is it going to be a negative or a positive? So it was with trepidation that I opened the e-mail and was absolutely delighted to see that the Medical Research Council had decided to fund the project for which I had applied as the principal applicant under the MRC CFS call. I was in clinic when I received the email so found it difficult to hide my excitement for the rest of the afternoon !

I then received a text from one of my colleagues, Professor Jones, to let me know that our second Newcastle application had not been funded but that didnt dampen my excitement about the opportunities that my funded project would give us in terms of furthering our understanding of the causes and consequences of Chronic Fatigue Syndrome.

It was later that evening when I received my third e-mail from another colleague, Dr Ng, who had been the principal applicant for the third Newcastle application to the MRC. I was thrilled to hear that his application had been funded as well.

So all in all, Newcastle obtained two out of the three applications which were successful, and overall, we managed to secure over half of the 1.6 million pound pot for which we had applied. The two projects that have been funded involve really very different studies.

The first, the one for which I am the lead applicant, is a project to look at autonomic dysfunction and to see whether we can define what the underlying causes of this problem are in people with CFS ME and how it relates to memory and concentration problems.

The second application, the one for which Dr Ng is the principal applicant and where I am a co-applicant, is a project that will explore the immune system in people with CFS and look at inflammatory markers in CFS and another fatigue-associated disease, Primary Sjogrens Syndrome.

The aim of this project is to define an immunological bio-marker for fatigue and as there are currently trials on going aimed at improving symptoms in pSS if we can confirm that similar mechanisms lead to fatigue in both diseases this might allow us to fast track treatments.

We are so thrilled at the opportunity that the Medical Research Council have given us in Newcastle and firmly believe that this will provide a platform from which our work in this area can grow. CFS/ME is a chronic debilitating condition that ruins peoples lives and we are confident that this research will further our understanding of the causes of this terrible disease and help us to develop new and better treatments.

In addition, the award of such significant grant funding to Newcastle has underlined our important work in this area and consolidated our reputation in research in the area of fatigue pathogenesis. We are very much looking forward to starting the research and will be delighted to update you as things progress.'

 

[Enid]

Thanks Firestormm for posting - I'm no scientist but let's hope this research really does find some answers. And not just pathologies of which so much is already known.

 

[Firestormm]

I had been trying for some time to get the MRC to update their website with more detail regarding the projects they are now funding. Finally got confirmation through earlier today.

I haven't yet read through it all but there is far more there than has been conveyed before by way of explanation. It's relatively easy to follow but as there are 10 pages I don't think it's worth me copying and pasting.

Webpage: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm : See MRC-funded Research Projects: or hit this link for a download of the pdf. file: 12 April 2012: http://www.mrc.ac.uk/consumption/id...dID=35295&dDocName=MRC008582&allowInterrupt=1

 

[Enid]

Very interesting - thanks Firestormm. It's looking good to me (but I'm no scientist). And not a psycho in sight at last.

 

[Firestormm]

I haven't got past the first study in that link yet Enid! And yet I see on the MEA Facebook page a certain someone (who shall remain nameless) is all ready slagging it all off. I don't know how she could be so fast. Really I don't.

It will take me a month of Sunday's the read it, analyse it and then even begun to interpret it! And it's relatively straightforward - in terms of explanation. Says more about my abilities at present I think than anything.

Hopefully someone will got through it all. I'd asked Prof Holgate for some more explanation/information about the Sjorgen's project in particular; and then started asking the MRC 'corporate' lot who are responsible for the website updates etc. to refresh their information. Finally got the message and links today

 

[Yogi]

Interesting to find out that Peter White obtains money from the DWP and Swiss Re.

http://www.mrc.ac.uk/Utilities/DeclarationsofInterest/MRC006493

This is such a major conflict of interest that any such research or decisions made have to be very questionable.

 

[Esther12]

Good to have some more info available for people to look in to.

I haven't got past the first study in that link yet Enid! And yet I see on the MEA Facebook page a certain someone (who shall remain nameless) is all ready slagging it all off. I don't know how she could be so fast. Really I don't.

I never use facebook, but I get the impression that more and more discussion goes on over there, rather than on forums. To me, it looks like a worse format for discussions though.

edit: I'm just posting this link here, because I don't think it's worth starting a thread for, as it's unlikely to be interesting to many:

2011: A new pathway for the regulation and governance of health research:

http://www.acmedsci.ac.uk/download.php?file=/images/publication/newpathw.pdf

The parts I read (it's over 100 pages long) seemed pretty annoyingly smug and contented, with little focus upon the need to ensure that researchers cannot manipulate the presentation of their own results in a misleading way without facing disciplinary action/accountability.

I didn't really think it was worth reading, but others might be more interested than I.

 

[Mark]

I haven't got past the first study in that link yet Enid! And yet I see on the MEA Facebook page a certain someone (who shall remain nameless) is all ready slagging it all off. I don't know how she could be so fast. Really I don't.

The answer's NO!...now what's the question?

 

[Dolphin]

I had been trying for some time to get the MRC to update their website with more detail regarding the projects they are now funding. Finally got confirmation through earlier today.

I haven't yet read through it all but there is far more there than has been conveyed before by way of explanation. It's relatively easy to follow but as there are 10 pages I don't think it's worth me copying and pasting.

Webpage: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm : See MRC-funded Research Projects: or hit this link for a download of the pdf. file: 12 April 2012: http://www.mrc.ac.uk/consumption/id...dID=35295&dDocName=MRC008582&allowInterrupt=1

I finally got around to reading this. In case other people never looked, the drug being tested in the sleep study is sodium oxybate, aka GHB, Brand name is Xyrem.

Slightly disappointing that they couldn't try more than one dose as I wonder if that's going to tell us that much (in terms of its possible efficacy as a sleep medication); but certainly better than no study.

 

[user9876]

I finally got around to reading this. In case other people never looked, the drug being tested in the sleep study is sodium oxybate, aka GHB, Brand name is Xyrem.

Slightly disappointing that they couldn't try more than one dose as I wonder if that's going to tell us that much (in terms of its possible efficacy as a sleep medication); but certainly better than no study.

I believe there have been GHB studies for fibromialga which were positive but the FDA turned it down as a licenced drug as it is too hard to control.

http://www.medpagetoday.com/ProductAlert/Prescriptions/22668

In FDA documents released in advance of the August panel meeting, FDA reviewers said there was "no question" the drug was effective, but advisory committee members weren't so sure.
Also, panelists were concerned about the drug's odd dosing mechanism, as was the FDA.

 

[Dolphin]

I believe there have been GHB studies for fibromialga which were positive but the FDA turned it down as a licenced drug as it is too hard to control.

http://www.medpagetoday.com/ProductAlert/Prescriptions/22668

Yes, remember that.

There was there was this study which supposedly involves chronic fatigue syndrome although I wasn't confident of the diagnosis:

​

Pain Pract. 2010 Jan-Feb;10(1):54-9.​

Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibromyalgia with sodium oxybate.​

Spitzer AR, Broadman M.​

Source

Neurology Department, Wayne State University School of Medicine, Detroit, Michigan, USA. raidl@ieee.org​

Abstract

This study investigates the response of the underlying sleep disorder associated with Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) to treatment. We retrospectively reviewed 118 cases clinically consistent with CFS or FM, treated in a neurology practice. Abnormal findings on sleep studies and associated human leukocyte antigen markers, and a clinical pattern suggestive of narcolepsy, are present in a high proportion of patients. When considered appropriate based on the clinical picture and test results, treatment with sodium oxybate was offered to these patients. Sixty percent of patients treated with oxybate experienced significant relief of pain, while 75% experienced significant relief of fatigue. We postulate that the response to oxybate in CFS and FM suggests a disturbance of sleep similar to narcolepsy. These findings support this novel approach to intervention and further research. The inability to distinguish CFS and FM by testing and response to treatment suggests that they may represent variations of the same disorder or may be closely related disorders.​

PMID:

20629967

[PubMed - indexed for MEDLINE]​

 

[WillowJ]

oddly, Xyrem is listed in Schedule III of our Controlled Substances list while Ritalin is listed in Schedule II, if Wikipedia can be trusted to be correct. So I think that's more of an excuse than anything else. If Xyrem were really that dangerous it should be on Schedule II, and we already are being treated with Schedule II drugs anyway (Ritalin is pretty much given out like lollipops!).

The Schedule is a ranking of risk:benefit based on risks of dependence & street demand, and whether there is any actual medical use--Schedule I has an extremely high risk of dependence with no accepted medical benefit and those drugs are not legal to prescribe, while Schedule IV has a quite low risk of dependence and includes, for example, codeine (an active ingredient in cough syrup).

 

[WillowJ]

though, Ritalin is given to us off-label, perhaps that makes a difference