well I am having a good little spell and am currently undertaking research using the internet, emailing various organisations and talking with both medical experts and people who have the condition and am astounded by just how similar these all are.
I have emailed the medical advisor from the M.E association about my query over inoculations and development of "sneaky bugger syndrome" as well as other profesionals.
one thing that I have posed is has there ever been a joint working group on these conditions, and if not why not, as you guys know its near on impossible to get a yes you do have it or no you don't and then you see someone else and the diagnosis changes again. I am looking for support if there has not been the working group so the professionals can get together, define what is lupus, M.E, CFS post viral no ifs or buts, hopefully it would help all of us.
Need to have a lie down now please give your views, ideas etc so we can debate and move it forward ta mark.
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scoobydoo1
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Sorry I'm a bit confused. What is it exactly that you are trying to establish?
Definitions of lupus and cfs are already there and are classified as two completely separate disorders. Are you concentrating specifically on the role of viral infections in triggering them?
sorry for any confusion, im looking at both, the definitions which are at best "wooley" and subjective and secondly inoculations and incidences of people developing symptoms there after.
as you know with lupus the main symptoms taken from the lupus uk website are fatigue/ weakness and joint/ muscle ache and pain amongst others, for M.E its pretty much the same.
there are definitions of both, and you are quite right they are classed as 2 different conditions, actually m.e/ cfs as a condition is debated by the health care field as many conditions on its own.
I am trying to foster joint working as you know you can quite feasibly be diagnosed with 1, then see someone else and get de diagnosed. theres no hidden agenda, just frustration by someone with ? lupus ? me ? pvs ? alien abduction syndrome hopefully may get some answers, make people debate, may even inform or help others.
Prior to being diagnosed with SLE in 2010, my GP had often written 'post viral fatigue' on sick notes for work - this followed a clinical diagnosis of Glandular Fever in 2006 (never showed up on blood tests). Not sure if this answers your question in anyway.
I think medics like to have definitions that go beyond patient self-reported symptoms (which CAN be very vague and difficult to describe).
I am fairly sure that lupus has some very clear markers - such as antibodies to your own DsDNA.
Does anyone know what the markers are for CFS/ME etc?
Lupus has 12 clear internationally recognised clinical indicators including positive ANA and Double Strand DNA among others. It is also medically classified as an auto immune disease. Im not sure but I believe ME and CFS are both classified as conditions and have no destructive effect on the body, unlike lupus. Lupus is grouped in with auto immune diseases of which there are about 110. It is my own personal perspective, but I believe nothing would be gained by grouping lupus with 2 conditions which are not auto immune. Fatigue and pains are only a small part of the complex illness that is lupus and I think patients with organ involvement would question the comparison. This is not a critisism though. When I was diagnosed, like you, i did mountains of research seeking answers as I beilived my lupus had been triggered by a severe cat bite that put me in hospital for a week.x
I've long suspected that ME/CFS is often, perhaps always, undiagnosed (misdiagnosed) autoimmune disease (whether Hughes, SS, SLE, whatever).
Yes, there are specific markers for lupus etc. But (a) we all know how unreliable they are and (b) in any case most doctors just don't test for them, or even think of them (perhaps even know about them!). So, if presented with various vague symptoms accompanied by disabling fatigue they reach for the nearest 'dustbin diagnosis' - often ME/CFS or depression. Sometimes menopause, stress or a virus.
Wouldn't it be nice if there was a general guideline to screen anyone presenting with multiple fatigue-related symptoms for AI disorders? Ha! Oink flap oink flap.
there are some major guidelines for m.e developed by the international consensus panel lead by Bruce m Caruthers, there is a 36 page guide regarding testing, care and educating professionals. as coppernob rightly commented, in this there is a very clear, unambiguous screening tool which, on review is excellent for all types of auto immune problems, I would suggest that there is an autoimmune illness spectrum where M.E/ CFS and Lupus all are part
Lupus is a very very complex disorder and although it certainly does present itself with the same symptoms as many other diseases it really stands alone and needs more research because medicine is really lost with this one. I think bunching it in with other complex disorders takes away from helping those of us with SLE. What we really need is for all the various branches of medicine that are involved in this disorder to get together. Rheumotologists never question about diet which is a big factor. Also hormones play an enormous part in all of this and that is why it is predominantly a female condition. Now if all these guys got together maybe we would have a better course of progress and management. Lupus affects the skin, heart, brain, lungs and kidneys and certainly comes with psychological damage. So we need the dermatologist, Rheummys, cardiologist, pulmonary doctors to have more education rather than tramping around to all of these and getting different responses. Money needs to be sunk into better reseach but this support of each other helps tremendously
agree fully with the comment regarding getting all the branches of medicine together, it backs up what I said originally about having criteria which the medical professionals agree and stick to and not go off on one if for example you don't have the rash, or your a man. It really winds me up that so many people with this and other conditions have to wait so long for a correct diagnosis, how can an average of 7 years be acceptable.
how many people could have a better quality of life if only everyone talked and agreed.
food for thought how come theres only 3 lupus specialist centres in the whole uk? and why the heck is it so hard for you to get to see a lupus specialist?, surely if the condition is picked up sooner and treatment, or stabilisiation takes place then in the long term it would mean better quality of life and be more cost effective to the nhs and society. just my views, but please continue the debate
You are talking about England. WEll, I was raised in Middlesbrough but left England years ago and live near Seattle now in a small rural area with lousy doctors. I have hauled all the way over to Seattle to see a Rhuemie who supposedly had a special interest in Lupus. He is young and very dynamic and smart and he did a survey while he was employed in San Francisco. BUT its all the same no matter where you live. There are no true lupus Doctors
. He talked of Cortisone and Plaquenil just like the other Drs I have seen. I will not take cortisone and I am so very very sensitive I turn down Plaquenil as well. ( I was diagnosed 30 years ago and have dealt with the whole thing with naturopaths. My brother has psiorotic arthritis and has lots of cortisone over the years and he is in really bad shape with Chrohns and heart disease so it backs up my theory of there not being anything to help us that will not kill us in the end
I read a book on the Lupus recovery diet by Jill Harrington last winter and I have been trying it. I am also going to go to a naturopathic clinic near San Francisco some time in the next couple of months. They get a lot of lupus patients. First you detox with fasting and then progress to lots of raw vegan foods and so on. I am NOT expecting a cure but this is the first time in my 26 years of marriage that I am doing something for ME. Its expensive and we cannot afford it but you only go around once and I am struggling at the moment.
Please forgive the typo and spelling errors in this .You can get the book online if you are interested
I'll post a blog after I have been to the cilin if anyone is interestd. Lots of people are glad to just take a pill and maybe as I get older ( I am 66) I will have to give in and go that route for the sake of quality of life. Who knows. Getting rid of stress is also a big factor in lupus but who can do that.
I don't think that Lupus (SLE) can be said to be the same condition as ME/CFS but I do think that there are links between Fibromyalgia and ME/CFS... that would be worth researching! Fibromyalgia is one of those conditions not recognised by all medical professionals which is similar to how ME/CFS started out. As ME/CFS is now widely recognised, it would seem appropriate that as those with Fibromyalgia are seen to have the same symptoms as ME/CFS but with pain (I'm aware that ME/CFS causes pain), these would be more likely to be linked. Also, as there are numerous conditions which present with similar symptoms and include an element of fatigue, maybe it would be more beneficial to research if there is an underlying condition which needs to be diagnosed with ME/CFS sufferers?
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please give your views, ideas etc so we can debate and move it forward ta mark.
hopefully may get some answers, make people debate, may even inform or help others.
Newly diagnosed and a little overwhelmed.
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