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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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One might ask the question whether muscle is really the target in MEs, since a lot of other groups seem to place the problem more centrally in the brain. However, taking Stephen Holgate’s multiple (and multisystem) disease idea to heart I think it is good to see all these potential targets under study. Muscle may be targeted directly in some cases and brain in others, or the problem may be a general one that affects cell metabolism across the board.
a rather interesting compound derived (I think) from cocoa called resveratrol.
It was intriguing to see a compound found in normal diet having an effect on cell cytokine handling in this way.
One might ask the question whether muscle is really the target in MEs, since a lot of other groups seem to place the problem more centrally in the brain. However, taking Stephen Holgate’s multiple (and multisystem) disease idea to heart I think it is good to see all these potential targets under study. Muscle may be targeted directly in some cases and brain in others, or the problem may be a general one that affects cell metabolism across the board.
I have been saying for years the inflammation does not show like doctors know it. Not only in me but also in animals. And I have seen a lot of animals with it.
How can it be autoimmunity when a large animal group known for their good health get it all at the same time?
Good thinking.
I have no doubt brain and muscles are both involved.
What do ypu think will happen when axon ends are attacked?
Lisa Blundell: Systematic review of blood cytokine concentrations in CFS.
This was purely a ‘paper’ study, reviewing the literature on blood cytokines in CFS, but still very interesting. The simple message was that there did not seem to be any consistent evidence for a rise in blood cytokine levels in CFS, in 29 papers found, except perhaps TGFbeta.
Not sure which animals these are? Nobody is suggesting, I think, that all MEs are autoimmune based. The Norwegian study suggests that maybe half of human cases might be. 'Epidemics' either in humans or animals are less likely to be autoimmune to my way of thinking. I think we run into trouble if we argue that one size fits all.
In the hepatitis patients depression and fatigue were both problems but they occur at completely different times. Fatigue is almost immediate. Depression comes later. Moreover, some patients have one without the other. And it is not just that depression takes a bit longer to kick in. Fatigue can continue for months or years after treatment in the absence of any depression.
Progress in understanding diseases like lupus, RA and polymyalgia has been dreadfully slow because people do not think in terms of different processes, like complement activation or cytokine release, but keep just thinking of 'inflammation'. A molecule like leptin can be involved in response to injury or just in not being hungry. It is not an 'inflammatory signal'. Most cytokines we call inflammatory are mostly used to ensure there is no inflammation. Inflammation is a rubbish term we need to bin. The whole debate is at a level too low to get us anywhere.
1. An emphasis on how much ME/CFS had been neglected, how disabling it can be and how much it needs more attention with high quality research, which is now beginning to get off the ground.
3. The recognition that it has been pressure from patients that has got research out of the doldrums.
4. The admission that there had been a breakdown in trust between doctors and patients and that this has to be faced head on and put behind us.
5. The value of capitalising on patient involvement by having meetings where patients and researchers meet together.
Resveratrol comes from the skins of red grapes and some other fruits and is in red wine and (yippee!) chocolate. You can buy it as a food supplement. I think a few PR members have tried it but I don't know what kind of results they've had.
It has become well-known for alleged cardiovascular benefits but:
http://www.nhs.uk/news/2014/05May/Pages/Resveratrol-red-wine-chemical-overhyped.aspx
Lipkin got the second biggest, and slightly uncomfortable, laugh of the day when Holgate punted a question about gut issues to him, saying he wasn't going there. (Hmmm!)
Everyone seemed to agree, as Andrew Lloyd said later, that we are not looking for perfect criteria for ‘CFS’ or for ‘ME’. CFS is just the general symptom pattern we want to try and alleviate, it is not ‘a disease’. And the causes of that will be multiple so there is no point in looking for one ‘ME’ either. Other branches of medicine have learned this lesson. There is no disease called ‘asthma’.1