National CFIDS Foundation- new research and ME tests/markers

[Insomniac]

I'm a member of the National CFIDS Foundation and just got their latest newsletter in the post. I'm sure they'll post it for free on their website in a couple of months anyway but I wanted to share some interesting things I read in it..

An article on CFIDS/ME Markers:
They listed 4 markers
1) STAT 1 Marker which is a protein that has been found abnormal in ME patients. I looked this up and annoying ly it is not available commercially, only for research.
2) Elastase which I have no idea what it is. This test for M.E was discovered by DeMeirleir.
3.) A Marker for abberant prions in CFS. It said there would be more information in the next issue. Dr DeMeirleir patented that too.
4) A chemical urine test for M.E
This got me really excited. Imagine getting this quickly diagnosed by a simple urine test. It was another DeMeirleir patent. I looked it up and was disappointed to see that in one study it only diagnosed 75% of M.E patients while the healthy controls had 4% false negative. It's not specific to ME either but to many illnesses where the TH1/TH2 part of the immune system is abnormal.

The article made a point of saying that these tests also show positive in people exposed to ionising radiation.
Another marker I know of which was not in this article is low blood volume which was researched by the same group.

Then there was an article on the latest research publications they funded.
First it talked about a drug Imatinib that is used against chronic myeloid leukaemia CML. The article sort of posits that it could help M.E. (I am not sure, I wish they would write their articles clearer.:thumbdown: )
Then it talked about the Hany Al-Shemy paper "Predicting in silico which mixtures of natural products of plants might most effectively kill human leaukaemia cells" I have not looked it up yet.

There was also a list of tests that are supposed to show abnormalities in ME patients but I don't have the energy to type out the extremely long list at the moment.

I liked the NCF for their anaeasthesia protocol, their predicting that Rituximab might help before the Norweigens nailed it and the way they dig out obscure things like trimetazidine drug patent. I wish some doctors would research this drug for ME and FM.
http://www.mecfsforums.com/index.php?topic=3432.0
My only problem with them is that I wish their newletter was less wordy and more clearly written.

I just have one question - in their list of lab tests that define their NCF cohort of patients, they say "Immunoglobulin subclass deficiencies" would show abnormalities. What is this? Is it the same as a standard immunoglobulin test that every doctor does?

 

[snowathlete]

Thanks for posting this summary.
to answer your question, the test is different. I just got my subclasses back and my Alpha 2 (if i remember right) subclass is a little low. Don't really know what it means yet.

 

[dannybex]

I used to get the NCF newsletters, but got so tired, pardon the pun, of their constant bashing of other organizations, especially their main rival, the CAA. It seemed like more than half of every single issue was spent harping on past grievances over and over and over again, while constantly reminding everyone that they were an all volunteer organization, as if that made them better than other groups. They'd also bash almost any sort of natural treatment, even if it had clinical research to back it up.

And they had this strange habit of bolding names, like Kim McCleary, for example, as if names were more important to a brain fogged patient population rather than important findings from research or studies.

Finally, didn't they claim at least five-six years ago that they had found 'the' cause of ME/CFS?

 

[user9876]

patents are published and google run a patent search service

So one of DeMeirleir's recent patents is
Methods and Compositions for Evaluating and/or Treating Chronic Immune Diseases - Filed July 13th 2012

http://www.google.com/patents/US201...a=X&ei=zOlUUeWoIIPP0QXbtYGAAg&ved=0CC8Q6AEwAg

1. A method of evaluating a subject for Chronic Fatigue Syndrome (CFS), the method comprising:
(a) obtaining an intestinal bacteria assessment for the subject; and
(b) employing the assessment to provide an evaluation of a subject for CFS.
2. The method according to claim 1, wherein the intestinal bacterial assessment comprises a comparison of a measured population of one or more intestinal bacterial species to a control.
3. The method according to claim 2, wherein the one or more intestinal bacterial species is selected from the group consisting of Prevotella ssp., Asaccharobacter ssp., Lactonifator spp., Eubacterium spp., Turicibacter ssp., Ruminococcus., Enterococcus ssp., Holdemania ssp., Roseburia ssp., Alistipes ssp. and Ethanoligenens ssp. and combinations thereof.
4. The method according to claim 3, wherein the assessment comprises a comparison for two or more species selected from the group consisting of Prevotella ssp., Asaccharobacter ssp., Lactonifator spp., Eubacterium spp., Turicibacter ssp., Ruminococcus., Enterococcus ssp., Holdemania ssp., Roseburia ssp., Alistipes ssp. and Ethanoligenens ssp.
5. The method according to claim 1, wherein the assessment is obtained using a 16s rRNA protocol.
6. The method according to claim 1, wherein the intestinal bacterial assessment comprises a ratio of measured populations of two bacterial groups.
7. The method according to claim 6, wherein the two bacterial groups are Firmicutes and Bacteroidetes.
8. The method according to claim 1, wherein the assessment is obtained using a metagenomics protocol.
9. The method according to claim 8, wherein the metagenomics protocol produces 16s rRNA amplicons.
.....

I would be surprised if they got claim 1 since but the more detailed claims suggest what they are looking for. There is also a detailed description in the document that I haven't read. A patent is ment to have sufficient detail for someone who understands the state of the art to produce the invention. But they are written in an obsure way.

 

[Valentijn]

I used to get the NCF newsletters, but got so tired, pardon the pun, of their constant bashing of other organizations, especially their main rival, the CAA. It seemed like more than half of every single issue was spent harping on past grievances over and over and over again, while constantly reminding everyone that they were an all volunteer organization, as if that made them better than other groups. They'd also bash almost any sort of natural treatment, even if it had clinical research to back it up.

Yes, I find their "call for the resignation" of Dr Kenny Meirleir to be absolutely ludicrous. I have zero use for any patient org which focuses so much on derailing any research and treatment they disagree with. Even if there were any foundation for their complaints, they accomplish nothing by attempting to remove one of the very few ME/CFS doctors in the world.

 

[Enid]

What surely not calling for the resignation of KDM, one of the most advanced, can't believe, except human frailities and politics ...... and lack of interest in THE PATIENT. Apologies for being so outspoken but personal attacks speak volumes. Any idiot (and all sufferers) know just how advanced KDM is.

 

[Insomniac]

Thanks Snow Athlete for clarifying.

I don't really read the newletter for the politics, just for the research. I enjoy the bashing of the CAA alone because I detest that specific organisation. The rest of the politics I usually gloss over or ignore and I just read the research and information parts of the paper.

Re: Kenny DeMeirleir. I really don't know what went on. My guess was that the NCF were teed off that he discovered low STAT 1, and it was hidden in a patent, not published while they as a group relying on donars had to fund to replicate work to find it out. Perhaps it was their fault for not finding out that it was in a patent first, perhaps it was KDM's fault, perhaps it was no one's fault and was just a cock up of communication. Who knows.
If a group funds good new research while condeming CBT and exercise then it's good enough for me.
My only problem with them is that I wish they would write their research articles a bit clearer.

 

[MeSci]

I'm a member of the National CFIDS Foundation and just got their latest newsletter in the post. I'm sure they'll post it for free on their website in a couple of months anyway but I wanted to share some interesting things I read in it..

An article on CFIDS/ME Markers:
They listed 4 markers
1) STAT 1 Marker which is a protein that has been found abnormal in ME patients. I looked this up and annoying ly it is not available commercially, only for research.
2) Elastase which I have no idea what it is. This test for M.E was discovered by DeMeirleir.
3.) A Marker for abberant prions in CFS. It said there would be more information in the next issue. Dr DeMeirleir patented that too.
4) A chemical urine test for M.E
This got me really excited. Imagine getting this quickly diagnosed by a simple urine test. It was another DeMeirleir patent. I looked it up and was disappointed to see that in one study it only diagnosed 75% of M.E patients while the healthy controls had 4% false negative. It's not specific to ME either but to many illnesses where the TH1/TH2 part of the immune system is abnormal.

The article made a point of saying that these tests also show positive in people exposed to ionising radiation.
Another marker I know of which was not in this article is low blood volume which was researched by the same group.

Then there was an article on the latest research publications they funded.
First it talked about a drug Imatinib that is used against chronic myeloid leukaemia CML. The article sort of posits that it could help M.E. (I am not sure, I wish they would write their articles clearer.:thumbdown: )
Then it talked about the Hany Al-Shemy paper "Predicting in silico which mixtures of natural products of plants might most effectively kill human leaukaemia cells" I have not looked it up yet.

There was also a list of tests that are supposed to show abnormalities in ME patients but I don't have the energy to type out the extremely long list at the moment.

I liked the NCF for their anaeasthesia protocol, their predicting that Rituximab might help before the Norweigens nailed it and the way they dig out obscure things like trimetazidine drug patent. I wish some doctors would research this drug for ME and FM.
http://www.mecfsforums.com/index.php?topic=3432.0
My only problem with them is that I wish their newletter was less wordy and more clearly written.

I just have one question - in their list of lab tests that define their NCF cohort of patients, they say "Immunoglobulin subclass deficiencies" would show abnormalities. What is this? Is it the same as a standard immunoglobulin test that every doctor does?

75% sensitivity isn't bad as tests go. Not sure what you mean by false negative - do you mean that the test indicated that 4% of healthy controls were ME sufferers? This would be false positive, and is a pretty good selectivity. No tests are 100% accurate as far as I know, and quite a few are worse than that, e.g. for breast cancer. Accuracy improves when you do more than one type of test.

I guess the immunoglobulin subclass deficiencies refers to levels/activity of IgG, IgA, IgM, IgE and subgroups thereof, e.g. IgG1.

Personally I would not want to risk taking drugs like Imatinib. Have a look at some of the adverse effects listed on this page:

http://www.medicines.org.uk/guides/imatinib mesilate/leukaemias (chronic, myeloid)

If we want treatment soon, no drugs at early-stage development are likely to help us, as drug development takes decades and the vast majority of candidate drugs have to be abandoned due to being ineffective and/or dangerous. Those that are already being used for other things may be a better bet for people who want something soon, but as you can see from the above link, some are very hazardous.

 

[Guido den Broeder]

These four tests are not new. Stat1-alpha (depleted in ME) and elastase belong to the same pathway as RNase-L.
I wouldn't call the urine test a marker; too many conditions can give a positive result.

Some ME patients have immunoglobulin deficiencies, which can be treated.

 

[taniaaust1]

I dont understand why ME isnt made to be like many other diseases in which there is a list of several markers and a diagnoses is given if one has a certain number of these.

I think our orgs should be pushing for that as after all we do have markers which could be used, not just the ones listed here but other tests could be used to to come up with a ME diagnoses. Using a combination could make diagnoses far more accurate.

 

[Insomniac]

75% sensitivity isn't bad as tests go. Not sure what you mean by false negative - do you mean that the test indicated that 4% of healthy controls were ME sufferers? This would be false positive, and is a pretty good selectivity. No tests are 100% accurate as far as I know, and quite a few are worse than that, e.g. for breast cancer. Accuracy improves when you do more than one type of test.

I guess the immunoglobulin subclass deficiencies refers to levels/activity of IgG, IgA, IgM, IgE and subgroups thereof, e.g. IgG1.

Personally I would not want to risk taking drugs like Imatinib. Have a look at some of the adverse effects listed on this page:

http://www.medicines.org.uk/guides/imatinib mesilate/leukaemias (chronic, myeloid)

If we want treatment soon, no drugs at early-stage development are likely to help us, as drug development takes decades and the vast majority of candidate drugs have to be abandoned due to being ineffective and/or dangerous. Those that are already being used for other things may be a better bet for people who want something soon, but as you can see from the above link, some are very hazardous.

Thank you so much for answering. It really helps. I should have said 4% "false positive" , like you say the urine test indicated that 4% of healthy patients had M.E.

 

[Insomniac]

Thanks to everyone who has given information.


I looked up the El Shemy paper.

As I understand it, they tested a number of natural substances, many available as supplements and tried to see if they would work against cancer cells. I assume they think that the same supplements that help for cancer will help M.E.

The abstract is here: http://www.ncbi.nlm.nih.gov/pubmed/23431350
" The aim of the analysis of just 13 natural products of plants was to predict the most likely effective artificial mixtures of 2-3 most effective natural products on leukemia cells from over 364 possible mixtures. The natural product selected included resveratrol, honokiol, chrysin, limonene, cholecalciferol, cerulenin, aloe emodin, and salicin"
Full paper here: http://www.hindawi.com/journals/ecam/2013/801501/

I wrote to the NCF and asked what was worth trying. I was told by the woman answering that she herself was trying Limonene as a supplement, it helped her a bit and *some* others found that helpful for their M.E. She was trying a large number of supplements herself.
I have had digestive problems with limonene in the past and have problems digesting supplement so I didn't bother writing again to ask her exactly what combination she was trying.
I write about it here because maybe others with less digestive problems can consider trying Limonene. I take large amounts of Vitamin ester C and it helps my bowel problems.

Here's a few relevent quotes to save time reading the long paper:
The Cscore,Dscore and Combiscores were all significant for aloe emodin, chrysin, honokiol, mevinolin, resveratrol, l-ascorbic acid, 6- palmitate, and cholecalciferol (Table 3 (a)). ...
...Twelve pairs included aloe emodin suggesting that this natural product would work well in many mixtures. There were 7 pairs that included honokiol and 6 for chrysin. Even natural products not predicted to be effective alone, like limonene, could be effective in paired mixtures.
...Eleven drug combinations included aloe emodin, again suggesting that this natural product would work well in many mixtures. There were 5 mixtures that included honokiol but only 3 for chrysin. Again natural product not predicted to be effective alone like limonene could be effective in multiple mixtures (Figure 3)."

 

[Insomniac]

"I dont understand why ME isnt made to be like many other diseases in which there is a list of several markers and a diagnoses is given if one has a certain number of these.

I think our orgs should be pushing for that as after all we do have markers which could be used, not just the ones listed here but other tests could be used to to come up with a ME diagnoses. Using a combination could make diagnoses far more accurate."

Hear Hear