Leopardtail
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I don't think that is quite right. To crack this I think it is important to see the problems for what they truly are. ME, maybe under the name of CFS, is recognised as a serious handicapping disease by all the doctors I know. 'Authorities' do not really come in to this. The doctors' view prevails. The problem is that most of the medical profession assume that CFS is insoluble. The solution is to change that perception by doctors. And thinking diseases are insoluble is usual. We all thought cancer was insoluble, and that rheumatoid arthritis was insoluble and that cardiac transplantation was science fiction - until people starting finding that they might not be. My friends who look after PWME would love to think it was soluble but they simply don't have any idea how it could be. I don't see wilful neglect so much as lack of imagination - which may be a shortcoming but not a crime.
I do agree that the assumption of insolubility is often flavoured by an assumption that ME is often caused by false beliefs or negative attitudes. And there has been a fashion for saying all of it is. But that would blow away like a feather if it was proved wrong. All that needs is something like the tensilon test for myasthenia gravis, which changed a psychosomatic illness into a muscle end plate one.
It will not be cheap but I think the money can be found. My impression is that it is hardly surprising that ME has not been sorted out so far, considering how few people have been working on it with so little in the way of resources. What it needs most of all is not money but lots of people thinking about it as a soluble problem. I think that may be getting going.
Lots of simple basic things are there to do - I keep thinking of things while I am posting on these threads. Clues are probably lying around like leaves in November. We just need people to focus and share expertise and think 'soluble'.
@Jonathan Edwards are we missing something,
How are we going to change the system? How can we overcome this impasse?
It's entirely about money.I got buttonholed byIiME because things were already changing. I got interested because people had already made the shift to 'ME is soluble'. That has not fed through yet, but I think it will.
All of those people 'working on the problem' have to subsist. Running five blood tests on each of sixty patients to test a hypothesis is very rapidly going to cost £9,000 if they only cost 30 each. Add say £15,000 per year subsistence while doing a phd we are already up to 55K without university fees,or other costs.
Doing research is an expensive business, there are very many useful hypotheses already, I have one myself. Getting access to funding for me to test it however is beyond a nightmare. Nobody wants to fund researchers without experience and to get that you need .... We need new minds on the job, funding for MRes candidates, Masters projects doing meta-analyses. Master projects in bio-informatics etc. What we lack is access for the new blood, the maverics, the room shakers, and the plodders who will do grunt work.
We have too many 'superstar egos' not enough original thought or diligent hard work. These superstars are not doing hard science, the three years of rigorous analysis that precedes the lab work.
Each individual system: bowels, nervous, cellular, endocrine needs circa a year of solid works as a minimum. There are more than 300 papers on catechols as Neurotransmitters before one even starts. Each issue in ME demands specialised knowledge of multiple systems. My special interest in ME requires in depth Mito knowledge, reasonable endocrinology, in depth Neuro-endocrinology, specialist knowledge of hormone receptors. I can run rings round my GPs, a top endocrine consultant, at least two leading ME specialists and still don't know enough. All that is needed to only understand the way the body generates energy and regulates that process. To stand a cats chance, we need ME specialists and multi-disciplinary teams, rather than specialists in a 'field of medicine' who dabble in it....
Everybody you speak to here has at least five or six significant dysfunctions probably none of which qualify the 2STD rule.
I know it now me who's being the awkward customer or defensive patient. What I am trying to encourage is a 'fully rounded view' that is not too skewed by your prior experience. I saw a clear declaration that you suspected multiple groups, what I am trying to foster now is the logical extension - you can't assume a single dysfunction causes all of our diseases, but you also can't assume that singly for one person. It's an unsound hypotheses with no data to support it.