Tina Tidmore (part of the ME/CFS Worldwide Patient's Alliance started in August 2010 on Facebook): The main goal is to alert the world to a growing Public health threat known as "chronic fatigure" or in other countries, Myalgic Encephaolmyelitis, and we are doing this through advertisements, so from their beds and wheelchairs, these patients, many of whom are disabled, are speaking out to the Public to let them know about this illness and about the mis-information and misconceptions about this illness. It is known that this is not just something that involves, the patient, it involves other people that may become sick. At this point we have 1900 members on Facebook, and we have placed an Ad in the Washington Post.
Interviewer: How successful was the Ad? Did you get a lot of response?
T: Well we got a Press Release as well, and that was brought out Internationally. It really energised the patient community because they wanted to have their voice heard, and what is great about this is that using today's technology, they were able to vote on the Ad's content - they got to decide. We had Organisations that came on to support us – taking the lead was Pandora, who helped get this established, but then we had (other groups). The main message was that we need to get more funding and the Press Release was distributed on mainstream media, it appeared on many websites, even as far as India. We had some feedback that some patients in the Washington area had people they know ring up to say that they saw the Ad. We had some news media interest as well. It was very good. Many patients faxed the Ad to congressmen, because it was about funding and letting them know about the new virus discovery, and what this may mean for Public health.
I: There was some controversy about the discovery.
Dr K: The thing about Chronic Fatigue is this. It is an illness that we have known about now for more than 2 decades – I have been researching in this area since 1984/1985 – something like that. We have known for a long time that there is something seriously wrong with these patients, and that the immune system looks for all the world like someone with a chronic viral infection. Over the course of the last 26 years we have looked at a lot of different viruses, and then we are finding different viruses Epstein Barr, HHV6, some evidence of Coxsackie virus – causing gastro-enteritis – stomach flues, which can sit latent for many years and then reactivate later. So there's a lot of very common viruses we have all had that, if the immune system function falls, allows them to reactivate. We have been looking at viruses for some time. What was new in the last year, was a paper that came out about 14 months ago from the Whittmore Peterson Institute that suggested there was a retrovirus, a distant cousin to the HIV virus, that was infecting the majority of these patients. It created, obviously a great deal of scientific interest. It would be different than the usual reactivation virus we have looked at because instead of the usual virus common in everyone, this is a virus that is uncommon yet prevalent in this population. So what happened after that was, as always, happens with scientists, people jumped in to try to replicate the data, or go further with the data, and a lot of different studies came out. There were 9 different studies that came out after that study that used a method called pulmonary chain reaction (PCR) to look for pieces of the virus, a little signature of the virus, that failed to find it. Yet there were 2 other studies that came out that used culture and bio-sequencing to try to identify the virus, in addition to PCR and other methods, and they did find the virus. So we have a couple of papers that validated the first paper, and a bunch of papers that failed to validate the first paper – everyone using different methods and so it is a big deal. It's a big deal not just for the chronic fatigue patients, as you can imagine – they are waiting with baited breath because, if this virus is associated and if it is the kind of virus that could have damaged the immune system and explain this illness in a large percentage of the people that are sick. Also, in the 3 positive papers that came out, they also found a very small percent but a very real percent of people in the general population that are healthy, which caused a great deal of concern about the blood supply – if the virus is out there in healthy people and they donate blood, what is the possibility that they might contaminate the blood supply with a potential pathogen, and so there has been a strong Government reaction to try to get to the bottom of this question: whether or not this virus IS out there, and whether or not it is a pathogen.
I: First they came out and said it caused it, and now they are saying they are not quite sure, and I guess it had something to do with mouse DNA or being a contaminate…
Dr K: That's to do with the nature of PCR. It's a Nobel prize winning method discovered 20 years or so ago. You take something in minute amounts (Dr ? mentioned who said he could put a thimble-full into a swimming pool and take one drop and be able to identify it in his swimming pool using PCR), it takes very little protein from whatever you are studying from. So the PCR methods that had been applied in this case are working right at the edge of their sensitivity, there is so little virus there that you have to really amplify, amplify, amplify to be able to find anything at all, so there is a real risk of false positives, but there is also a real risk of false negatives; and in the papers that came out wondering about contamination there was some evidence that some of the common reagents people use in their labs were contaminated with a mouse virus and messing up the assays. So you solve that problem by first using really good technology, 2nd, finding the part of the virus that is so selective – it is only looking for this virus, and not the huge family of common mouse viruses that are out there.
I: Mice have this virus already?
Dr K: Yes, mice carry this virus commonly.
I: So people could catch it from mice – could that be possible?
Dr K: Well it is a mouse virus so if it is true that it is in a human and is causing disease, it started from a mouse at some point and then it would mutate to become the type of virus that could infect a human. Conceivably not just any old mouse, any old virus, that could do it; a particular virus in some mouse at some time that mutated into a human strain.
I: Right. Just like they claim that green monkeys caused Aids.
Dr K: Exactly, like a monkey virus say, some 300 years ago, mutated to become a thing that could infect humans and mutated further to become this nasty virus that we are dealing with.
I: How many people would you say are diagnosed with this – there's probably a large some that are not even diagnosed?
Tina: I'll address that. About 1million although it is difficult to get an accurate diagnosis, but most agree that about 1 million at least, and to show how many people this is, if you were to take the whole population of San Francisco – about 800k – who have all come down with flu, and had symptoms of Alzheimer's, then think about how 25% of the City became housebound and could not go i.e. to school or to work, then if you imagine that plague continues for 25 years, with very little Government research, that gives you an idea of the numbers as far as Americans, but there are an estimted17m people worldwide that have this, so just look at the numbers – it is equal to whole metropolitan cities becoming with what some compare to a severe case of the flu with neurological symptoms, so that's why the world really needs to know about this. You know there is this big effort concerning the H1N1 when it was going to come, and yet we already have 1m Americans suffering from this disease, and it can disable someone for decades, so we really need to address physician education because, as Dr Klimas says, often there are so many that are undiagnosed with this illness – Dr Klimas you have that figure right? About 80%?
Dr K: Yes, that's what they're averaging right now. It's a much bigger problem than people think It's interesting - half the people haven't sought care but it means that half the people have, and didn't get the appropriate care that resulted in the right diagnosis.
I: Or they tried to get care and they were ridiculed by the doctor.
Dr K: Right, exactly – very common you know because this is an illness that has a stigma attached to it and we could talk about that – very frustrating – but you go to your doctor and they say you're depressed, or go change the colour of your hair, you know – I've heard the most ridiculous stories about things doctors have actually told patients to do to get over this illness
(Interviewer here mentions that she had chemical sensitivities, which has similar symptoms to CFS, and the doctors wanted to give her anti convulsion drugs to maybe reduce sensitivity! She states that that's the kind of things doctors do and they could kill their patients with their crazy ideas).
Dr K: Patients are so desperate they will do it. They are desperate. Actually what worries me is a researcher that you know, one of the things you require is consent when you do a study, and if people are so desperate to get well that they will do foolish things, is it really an ethical consent? Are they really able to understand the risk involved?
T: Because of the lack of physician education on this, they go from doctor to doctor sometimes for years, trying to find out what's wrong. Nowadays patients end up on the internet and they may actually see that they fit this diagnosis; then basically are left because of the misdiagnosis and misunderstanding and misconceptions, and lack of education, becoming their own physician. Then they have to find out what's the latest and they then become their own researcher and their own guinea pig. So with just a handful of doctors like Dr Nancy Klimas in the country, it leaves many patients without access to medical care, and that is all the more reason we need physician education, but the right kind of physician education based on the 4000 studies that show the biological abnormalities on this illness.
Dr K: There's quite a bit of very good science that shows how very real and very objectively measure what's wrong with patients, and yet this strange medical belief that it is not a real condition – it is psychosomatic, just persists. It's like a dogma that cannot be shaken out of the cobwebs of the medical administration.
I: Well the CDC was reluctant eventually to acknowledge that it was a disease – I think that took quite a few years.
Dr K: Yes, the CDC has certainly been under a lot of scrutiny because, basically with all this new virology work that has come out, you would expect the CDC to be right at the front of it, and not coming along behind.
I: I am interested to know whether any treatment protocals have been discovered? Any treatment regimens do help – has anything helped/ Oxygen treatments or anything like that helping with this condition?
Dr K: Actually what's wrong with the patients falls into a different system. Their immune system is impaired and over-activated, and making inflammatory cytokines. That's one thing. Their autonomic nervous system, which is the thing that sets your breathing rate and helps with your blood pressure and digestion – all the things you don't have to think about, is also not working correctly, off kilter and can disrupt a lot of things, and there's a lot of immune autonomic interaction so the two are playing off each other. The endocrine system also has some subtle disruptions, like low hormone levels – cortisol, oestrogen, testosterone, important hormones that can be slightly knocked up, and the sleep and pain centres are all disrupted, so you have this interactive system. When you talk about treatment you have to say, well, what do we mean by treatment. We can treat a lot of those things at least at some level, and hope to see improvement. The doctors in this country that spend a lot of time with these patients actually have a lot of success stories, and it gives patients a lot of hope.
T: One of the things that contributes towards the lack of understanding of this illness is the name. Calling this illness chronic fatigue syndrome is like calling diabetes chronic thirst syndrome. Fatigue is one of the symptoms of this illness just like thirst is one of the symptoms of diabetes, and people can get a little fatigued, or a little thirsty, but ME/CFS is much more, just like diabetes is much more than being thirsty. Considering there were two outbreaks in two locations reported to the CDC, it just baffles the ME community that the CDC has not looked more closely at a viral cause and that this got this name that was based on just one symptom that really trivialises this illness, and does not reflect the serious nature that many patients have to live with every day.
Dr K: Yes, the name has been a huge problem. Unfortunately, it is just saddled with this ridiculous name, and every effort to rename it and give it a proper name has fallen on deaf ears, yet in Europe, in England, and most of the rest of the world it is called Myalgic Encephalopathy (sic), which reflects the brain and the muscle and the inflammation of the illness do describe it as a neuro inflammatory disorder, and I think that is much more accurate.
I: Do you want to cover the basic and most common symptoms so that people might have it and not realise
Dr K: There are several case definitions but the main definition we use is the one that was developed by the CDC and it requires a disabling fatigue, and that is important because a lot of people are very dismissive of fatigue, but the fatigue is to the point that you cannot do your work, your life chores, but there is a difference between the level of fatigue, "I'm tired because I didn't get much sleep last night". It is a very, very disabling fatigue. Probably unique to CFS/ME is post exertional malaise, which means that if they do a little bit of exercise, if they just do a wee too much – I'm not talking about running a marathon and collapsing, I am talking about thinking of 10 minutes of exertion as if it was a marathon, and then collapsing, and they have a relapse after this kind of exertional challenge. That's kind of interesting because there is only one other illness that does that: MS has post exertional malaise – that's a neuro inflammatory condition. Then there are several other symptoms that are considered a part of the case definition. One is concentration and memory problems; non restorative sleep; muscle pain; joint pain; tender lymph nodes; sore throat and headaches that are different from the sort they had before they were ill. If you look at all that together, if the person has 4 or more of those symptoms and severe and profound fatigue, then they meet the case definition, if they do not have another good reason like a thyroid disorder that has not been treated. When a doctor sees these patients we have to do a lot of time ruling out other stuff it might have been, and then paying attention to the symptom complex.
(Tina went on to explain what patients feel like with the neurological problems; the lack of energy not like tiredness, or just run a marathon – not enough energy to make your body move. Brain doesn't function properly – people lose things, can't remember where they put them; don't absorb information properly, e.g. telephone numbers that you think you have taken in and you can't remember when you go to dial; computer software and how to use it. The cognitive problems can be just as disabling as the fatigue, and can be what causes a lot of people to go on social security.)
Dr K: The cognitive problems can be what causes people to go on social security – people with stellar records who, after the illness, supervisors report frequent mistakes; they need help with simple tasks: turning on their computers, making their mouse work. Can be devastating to people who were always very competent and competent and useful members of society that find themselves in apposition where they have to give up their work and careers that they love, to try to get better.
(T: there are many symptoms that patients have in addition to the diagnostic ones: light sensitivity, sound sensitivity and a broad range of other symptoms.)
Dr K: When you think of those symptoms think of them as neuro-inflammatory. Almost anyone can relate to having the flu and having that day when they lay in bed, and their eyes watered, and the slightest light hurt them and they couldn't read a newspaper, they couldn't concentrate to watch tv and follow the plot – that's the level of cytokine expression these patients have, and that's why when you have the flu you can't do any of those things. If you think of yourself as being under this neurological storm – the type of storm when you are fighting an infection like influenza, that's how these patients feel from day to day.
I: Can it have that sudden of an onset?
Dr K: Absolutely. More often than not it's a sudden onset disease, and usually post viral – very frequently post viral.
T Commonly patients may feel a bit better and go to the grocery store, and in the middle of shopping suddenly it feels like someone has pulled the plug and the whole energy just drains out of them, and they just have to sit down.
Dr K: If you take their blood pressure right there and then their blood pressure will be incredibly low, and they have this autonomic problem where they an be upright for about 15 or 20 minutes, and then all of a sudden – we can do this on a tilt table and reproduce this – put them on a tilt table and their blood pressure will be normal, their pulse will be normal, and then keep the challenge going for 20 minutes and Boom! Suddenly it just falls off.
I: Has there been a research study where someone has run MRI – is there some profile that an expert can look at and say this looks like the protocol for CFS?
Dr K: Sort of. In the brain there are these little tiny, almost pinpoint areas of inflammation that you can pick up on the MRI, and there's been a lot of discussion about what they exactly mean, and the running thought is that it is very likely a neuro- inflammatory spot, possibly a viral infection or something else, and that they move around the way that they, in MS, the lesions in their brain move around, so you wouldn't see the same spot in the same place every time you do the study.
(I: says about the MRI's for chemical sensitivity showing up data)
Dr K: Oh there's plenty of neuro imaging data to show the brain is different in this illness on a lot of different levels. The MRI is the least sensitive way to look. There's something called neuro spects, where you can look for information more clearly and that's more definitive. You can do studies that look at brain profusion and show that the blood flow is not normal through their brain, and you can do studies where you put the brain at task, like mental math, and show that the area that does mental math fails to get the extra blood flow it is supposed to have during that task. There's quite a few that show abnormalities; there's one real fascinating one that (Gupta Lang?) did that showed that when you are doing a mental task, instead of doing it in one area of the brain, like mental math where we use our temporal lobe, and that's where the math happens, but in these patients because that lobe is not working correctly, they have to recruit other areas of the brain before the task is complete. There's a mental swelling as a result. You get the right answer but it takes time because of the ping pong all over the brain to get the resources to solve this task. Fascinating stuff. I have really learnt a tremendous amount of what is wrong with these patients, but of course what we really want to learn next is OK what do we do know to make them better.
I: I work in the field of psychology so I am wondering, some of these people would present to a psychologist or psychiatrist and probably be given antidepressants or maybe anti convulsants, because we use them with deeply depressed people for instance, so what sort of psychiatric issues would they present with and be misdiagnosed?
Dr K: Well first anyone with a very serious and painful condition has about a 50% rate of major depression over the course of the illness, and that's not unique to CFS – if you look at MS, or HIV, or renal disease, or cancer, their numbers are quite a bit higher than 50%. But roughly 50% of these patients over the course of their illness probably will, at some point, experience depression and it may be reactive, because this is a terrible illness to have and it's frustrating year after year to be dealing with it, or it could be biological or chemical, if you would. So that is possible. And anxiety the same way – because their autonomic nervous system is like, basically, it is like being hyper vigilant, they have a lot of extra adrenalin onboard. Same as the way some of the PTST patients have a lot of adrenalin onboard. So they're living with a whole lot of epinephrine very frequently at times when you shouldn't have it, and it can look for all the world like an anxiety reaction, but it is different. Like, take that moment in the grocery store where the patient suddenly had to sit down because their blood pressure fell, and then their heart raced, and then eventually the blood pressure got better. Then the paramedic arrived – they will call it an anxiety reaction. It was NOT – it was (couldn't catch this ? ) hypertension with all the usual things that happen at that time, but the patient, by the time the medic gets there, is now getting a psych label, instead of being worked up (in the USA this means checked out) by a cardiologist, the way they should be at that point. They are being sent off to psychiatry and they may very well end up on psychotrophic medications completely wrongly, so it's a real dilemma. Much like the multiple chemical sensitivity patients, these patients often have a lot of drug sensitivities, and it is very difficult to find the right dose even when on the right medicine at times, because the patients have so much drug sensitivity issues. There are even, if you would, detoxification to be able to get rid of medicines in the usual way so they can accumulate and build up higher levels than normal. So a doctor can really mess this up, frankly, by not knowing what they are doing, it can be difficult. That's why we're so anxious to train more doctors and try to get more people expert in this area.
I: So do you have lists of doctors that people could find out about in this area?
Dr K: (Goes on to say about a couple of places: cocure, and International Association for CFS/ME of which she was president about a year ago, and which has a web page setting out clinicians and specialists) Tina then talked about the Carousel Network, who was going to be having Dr Judy Mikovitch from Whittmore Peterson Inst)
I: Asked about the drug trials for Ampligen. Dr K said she did research with it years ago when it was being tested for HIV, and stated that there were promising results then. She set out what it does (immune modulator and anti viral) Has to be given intravenously, which makes it more difficult to use. Had 3 Phase III clinical trials, and she is not sure why the FDA sent them back to do some more when they went to the FDA last year to ask for approval. Some clinical trials going on now using Ampligen, and more to come down the line. She said Ampligen is a promising therapy that she hopes come through from everyone. Tina said not only do we need drug companies and the FDA interested in this but we also need a clear diagnostic criteria that all researchers agree on, and in order to do so, funding is needed, that's why the Ad they put forward mentions funding, Doesn't make sense that the NIH put forward $144m in their budget for MS, yet only $5m for CFS/ME but twice as many people have CFS/ ME. It questions what the reason is for this. Got to hve more research funding to get answers - $150m may sound like a lot but compared to other illness funding, it is not that much. Public health threat of this growing, spreading illness is something that deserves more research.
(I says she guesses lobbyists are needed like for Muscular Dystrophy and Jerry's Kids.)
I: I have another question – the fact that the Red Cross has some directives on people with this disease making blood donations
Dr K: On whether CFS patients should donate blood. The decision was made to ask them to not donate for two reasons, one is whether or not there is a retrovirus XMRV – a very important question that needs to be answered, but it was thought until we do know, it is better to as people not to donate blood. The other was the very strong evidence that these patients have other viruses, and why should they be donating blood. Then, actually to throw in a third – cos I made this point to the Committee – it's really not good for these patients to show blood – they have a low blood (count?) anyway: it's just about the worst thing you can do is to take another litre of blood from them. I can't imagine – cos they're more than a litre low to begin with.
I: A lot of people do donate blood – I don't know why: even if you have the flu or something they don't want you to donate – they usually ask: how are you today?
Dr K: It's really a bad idea for people with CFS to donate blood for their own health, and also for the good of the Community. It doesn't make any sense. Talking about something that looks like an infectious illness of some sort, that became chronic. So why would that be a good idea?
(Tina said, yet if the patients are often told by their physicians that this is actually a psychological or psychiatric illness, and they have a few good days, they may think it's OK).
(I stated that a caller phoned in about the children in their community with ADHD and attention deficit disorder's like that in the front lobe area of the brain wondering how the research had overlapped into the study of that area)
Dr K: Some of the brain stuff brain imaging can be similar, and some of the immune stuff in Asperger's disorders can be similar, but it is new and not validated yet.
T: Concerning this virus it has been shown in some studies to be in prostate cancer patients. This virus may not just possibly be the cause of ME/CFS but we're looking at other cancers as well, because that would make sense if it follows the HIV model – as Dr Klimas says, it's a distant cousin to it, so that would possibly mean we're looking at other illnesses as well.
Tina went on to talk about the website: MCWPAOrg – asking for any healthy patients who want to help cos it took months for patients to get just one Ad in the Washington Post.
Interviewer thanked Tina Tidmore and Dr Klimas, and both thanked the Interviewer.