What research do you want to see?

Are Borgs vegan then?

I could do with a prosthetic eye ...and a couple of new hips ....I might want to lose a bit more weight though before I slip into anything skin tight

 

I am not aware of the borgs dietary preferences, I would assume it's reasonably healthy as I've never noticed any vending machines, fast food joints or chocolate wrappers. On the other hand I've not noticed any plants either, certainly not enough to feed billions of them anyway, so they may not be vegan.

Of course being, probably/hopefully, fictitious, and apparently also not having any obvious toileting facilities, this is entirely internally consistent.

It doesn't mean that the idea of an advanced medical nanite, of the type ascribed to the borg, wouldn't help us, a bit, before it all went wrong - I mean presumably the borg didn't start out that way, a series of small, increasingly deranged steps may have been involved before their final mission statement was arrived at.

 

Perhaps fungus.....? I don’t mind looking freaky or dressing inappropriately but I will need a pork pie to look forward to after I’ve absorbed other species into the collective

 

I would like a lot more work done on blood. Things like viscosity, blood volume, shape of red blood cells. My wish is to see if drugs prescribed for other illnesses can be used to improve symptoms of ME. At 71, I will not be alive to see drugs specific to ME be developed unless Dr Davis' theory stands up.(the one where you can be wound back to healthy state). Dr Davis is working on blood but his sample sizes are small.
Am feeling fuzzy headed so pls excuse waffly description.

1) recently I flew to US and injected Fragmin on day of flight and following day. ( I do this because I have factor v Leiden). It was a long day, very long, but other than some tiredness on the following morning, I was absolutely fine and went out for an excursion by wheelchair the following days. No noticeable pem. I have done this many times in the last few years with similar results. I think blood thinners are used to relieve ME symptoms in the US. Asked my GP about it yesterday but he says he cannot prescribe for this, not even for flights to new patients now.

2) blood volume can I think be measured by a Daxor machine but not sure we have one in UK. I think new ways are being developed in nuclear labs but the description ( can't remember if here or the other place) by someone who had tried at a cost of £600ish I think showed him / her to be unhappy with it. If we can't get blood volume measured, I would like be be able to get saline infusions. I feel hugely better after an infusion but research would be needed to provide validation for this. Again saline already exists and could be used in ME if it can be shown to be helpful.

I see no chance of improved symptoms at my age, worsening now, unless an existing drug can be used.


EDIT: 18/08/18. The OMF's Wed paper this week was on work on red blood cells which they hope might become a biomarker. The subject was the rheological properties of red blood cells in normal and disease states and a manuscript has been submitted for publication. So there is work taking place! Very glad!

 

It would be good to see more, thorough trials of intravenous immunoglobulin. On a Youtube video of a talk by Nigel Speight he said it had shown some promise around the time when CBT/GET were being put forward as treatments. Who knows what might have developed from there if they had not gone in the direction of psychotherapies.
http://me-pedia.org/wiki/Intravenous_immunoglobulin

eta: I've just been reading the NICE guidelines review from 2011 and immunoglobulin was raised as an area of interest.............but then PACE came along.

 

@Sly Saint
Yes, in the US there are patients on the forums who are getting benefits from IVIG sometimes in combination with R'mab. It is expensive and the insurance companies don't like approving it. I didn't know Dr Speight was interested.

An odd point for me is that when I developed " glandular fever" in 1986 alongside 2 colleagues ( we were all teaching), two of us were very ill but stayed at home. The third had to be hospitalised regularly to receive what I think was IVIG. She didn't return to college. I did but with PVS, not to work full time again and to develop ME 20 years later.

All those opportunities missed because of the BPSers. I was interested when I saw my GP this week, that he has abandoned exercise recommendations to me at least, and he would talk to me about valcyte, saline, heparin I.e. he was more open minded; not that we found a way forward because I don't think there is one currently but the discussion was more open.

There's a fair bit about heparin as ME treatment in the US, and since I need to take it sometimes, I think I need to investigate that. I find it hard to believe that a brand new drug will come in time for me.

ETA: but good luck to those of you who will benefit.

ETA2:https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/. This post examines the link with " sticky blood" aka Hughes syndrome or antiphospholipid syndrome. Will start another thread.

 

found in Mark Vinks recent article; Fluge and Mella research from 2016;

https://insight.jci.org/articles/view/89376

Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome
"This study found that the serum amino acid profile was changed in a large and well-characterized ME/CFS patient cohort, in a direction that suggests impaired mitochondrial pyruvate oxidation. This finding, in combination with increased mRNA expression of PDK1, PDK2, and PDK4, and of SIRT4, in PBMCs from patients, points to abnormalities in PDH regulation as a potential key factor in ME/CFS pathogenesis. Exposing cultured muscle cells to serum from ME/CFS patients indicated the presence of blood-borne substances affecting energy metabolism."

I'd not realised they had done a similar test.

So I'd like to see more of this.

 

We need firmer facts on disease course/prognosis. We know it's very debilitating, and lasts for years, or decades. But, we need more specifics. Disease course descriptions have been all over the map. For example, most recover in one to three years; one third recover, one third have waxing and waning symptoms, one third become severe; if you haven't recovered by your fifth year you won't recover, etc. With better data, the severity and longevity of ME could be more clearly and forcefully demonstrated.

 

I'd like to see research into the effect giving each, and every, chronically ill person £10 million has on welfare dependency.

Nice simple research, that would probably help people more, and certainly be faster, than anything else out there.

I'd define chronically ill using the six month rule.

ETA - It also occurs to me that such an experiment could also test the BPS hypothesis that we only stay ill and maintain the sick role for gain. So let's see, £10 million each, no more gain to staying ill, let's see if anyone miraculously recovers back to pre illness levels.

So in this one experiment we could help the chronically ill actually survive, help the DWP, who are obsessed with decreasing the numbers of ill people claiming benefits, and test a central BPS tenet.

Funding may of course be an issue.......

 

I was encouraged by the OMF report on Wed on blood issues with a manuscript submitted for publication, and the potential as a biomarker.

https://www.omf.ngo/2018/08/15/mohsen-nemat-gorgani/

There was also the dysautomnia conference

https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/

 

Hi Trish, Thanks. Yes, absolutely. A big part of the confusion has been the plethora of case definitions. We need to see studies using the CCC, and/or the ICC to reveal the disease course.

 

Another potential area of study: the medical profession's attitude towards, and treatment of family members of pwME. For example, have any ME carers recieved a diagnosis of depression because they have "MUS"?

 

I'd like to see a follow-up to the recent study suggesting increased myelin in the cortext and decreased myelin (or signal, at least) in the brainstem. Though it doesn't suggest a cause of illness, it might be proof of pathology, and it might be very useful in building future models of ME.

 

We see studies from time to time that identify CFS and ME subgroups. I would like to see a reasonably powered study that looks for all those subgroups, and determines how they match up. For how many factors do the groups match, and for how many is it all over the place and the subgroups are likely not valid?

 

Gender studies university and college departments don't seem to have grabbed onto the social and political stories within the ME crisis. The women's organization NOW, in the U.S., is in support, but this message seems slow to translate to academia. As well as biomedical scientists, we need more social scientists/gender studies experts to get their teeth into this issue. The medical jargon seems to scare some gender studies profs away. One said they are not a medical expert, so they can't study this.

Studies replicating Dr. David Systrom's invasive CPET studies should also be done.

And, question: are we just going on and on seeking more and more proof of physical abnormalities to justify ME as organic, when we already have enough? I know we need to find the cause (s), and treatments, but for decades, we have heard "there, this study is proof ME is a biomedical disease", and then we see that same rock being pushed up that same hill - more and more studies, still striving to prove ME is a serious physiological disease. It would be good to move on from here; achieve equitable government research funding, but put in place a package of tests to be used by clinicians.

(I know some in power recognize ME as physical, but many don't. The lack of government research funding proves the continual, conflicted beliefs about ME.)

Where is MS at re diagnosis? Aren't a few tests needed to prove the MS diagnosis? There isn't one magic bullet test for MS, so why should there be one for ME? Don't we have enough biomarkers now? I know not all test results are consistent with all pwME, but maybe they aren't with MS either. Couldn't we have a package of tests that prove ME is physical? How about the tests Brian Vastag had done for his insurance claim? ME experts have known for several years which tests show abnormalities. Take Dr. Lily Chu's "US ME/CFS Patient Survey - April to May 2013 for the FDA. Dr. Chu listed 5 tests ME experts use: NK cell activity, repeat cardiopulmonary exercise testing, brain imaging, neuropsychological testing and tilt table. We know there are variations of some of these tests, like Dr. Bateman's Nasa lean test, and the impedance cardiograph test. And, we now have Dr. Systrom's iCPET as well.

Influential websites still say there is no testing that provides objective proof of disability for ME. This is of course completely wrong! Many tests show abnormalities, and governments have known about some since at least the 1980s. Clinical use of a package of tests such as the ones Dr. Chu lists would go far in proving the reality of ME. Of course to get this in place is also another battle!

 

Or when someone contracts a virus when their body is already pulled low such as when in post-operative recovery, such as was the case for my wife. Maybe compounded by the person already prone to auto-immune issues.

Might be good to do a study for a large number of people, simply to establish what correlations there might between the contracting of ME, and whether the immune system was under stress for whatever reason at the time. Viral infection is the obvious one, but may not be the only thing. History of immune system issues? Body in ongoing process of, or recovering from, some trauma? Taking any medicines that might have been affecting the immune system? I wonder if such a study might show that the more of these boxes you tick, the more likely you are to go down with ME? Maybe the viral connection is that it turns out to the the final straw that breaks the camel's back. And perhaps the final straw is not necessarily always a virus, though often is? I would really like to seen answers for these questions.