This time of year - and Severe ME/CFS

It is that time of year again. Holiday time and the New Year is the saddest season for ME/CFS patients. While the dance of life goes on for many people, ME/CFS patients feel the heightened sense of abandonment and despair.

We need to try to do more to relieve their suffering.

I have felt for a long time that the key to the illness – should there be a key – lies with the severely ill. These patients at ground zero of this illness need to be studied - and studied in depth.

This is more possible today than any time prior. There are commercially available tests that could uniformly be applied to this patient group. I could list some of them, but I will forgo this at this time. And then there are the research tests that would delve even deeper.

Please excuse the repetition as I quote a few items from my previous blog posts.  As Stravinsky said, some things need repeating.

“It is my belief that we, collectively, have to look more closely at the most severely ill ME patients. It is my belief that they harbor, in their severity, the keys to this illness. Most doctors do not see the most severely ill. Dr. Kenny De Meirleir, in his trips into Norwegian homes, treats the very ill. Dr. Paul Cheney and Dr. David Bell also have occasionally seen the severely ill. Perhaps others have - and hats off to them.

But, by and large, the severe patient is isolated from everyone. The severely ill ME patients cannot get to a doctor's office. They languish in darkened rooms, cut off from reality, isolated and often abandoned, and without medical care. It appears that no one cares a whit about them. It is these patients on whom we have to focus our attention - both for their sake and for ours. More effort has to be made to "get in close," although this, in itself, is difficult under even the best of circumstances.

I know of a number of these patients. They have the willingness to participate, through testing, in their own potential betterment - provided that the severity of their situation is taken into consideration. Many already have had testing for immune function, NK cell activity, cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent testing needs to be applied to these patients using existing parameters - if only to set the stage for future possibilities that will soon arise.

Most people do not want to take a look in this direction. Most people turn away - including doctors. It is time to toughen up - and to consider these patients, and what they are going through. Testing of the moderately ill has not brought clarity. We need to brace up, take a good look and then move in close. While it is difficult it is the only decent and humane thing to do.”

“Until those at the center of this illness - those in darkened rooms - are depicted, embraced and understood, nothing will happen at the government level.

In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos), should be mandatory - to set the stage and to get the participants in the right frame of mind.

There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said no.  The government is content to give a grieving altar to the moderately ill and leave it at that.

The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from roofers, from plumbers, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything.”

“And what about the others - what about the really sick ones?

There is really only one way to present this illness, and it needs to be done more often. The face of this illness lies in the presentation of the severely ill patients. This is one of the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to make this video, visually and audibly describing her condition. This courageous and heartrending video that has so much power and dignity. We need to see more of these kinds of videos - images and pictures of the severely disabled. This is where the visual information lies - down near the bottom.

"Walled up:

Imagine a patient who cannot stand, who has extreme fatigue and must live a horizontal life. Imagine a person who is functionally blind from light sensitivity and eye muscle fatigue and wears a blinder 24/7. Imagine how this blindness might further limit this person's ability to move. Imagine this person with sound sensitivity so bad that they cannot tolerate the phone ringing or dogs barking outside. Imagine a person whose skin is sore and sensitive to the touch. Imagine a person who cannot focus their thoughts, has short term memory deficit, or can't speak clearly because of neurological deficits ("brain fog"). Imagine a person who has seizures, spasms and twitches. Imagine a person who has lost their sense of smell - or has hypersensitivity to smells. Imagine a person who cannot speak, or cannot speak above a whisper. Imagine a person with a feeding tube, IV medication, and oxygen. Imagine living in a world where things coming in and things going out don't happen. Take a good look. This is ME/CFS at the core. My friends in the UK call it ME. It is worth noting that all ME/CFS patients are on a continuum, shifting whimsically up or down the scale over the years.”

Incidentally these severe patients have measurable abnormalities that characterize the illness.

I have written about the film Voices from the Shadows here. Allow me to quote one part of this review.

“And yet the film does focus on "those who do not back away" - the caregivers. These caregivers are trying valiantly to save their loved ones, but the stress is in their eyes, in their movements. It is a very difficult position to be in, to chose to move in close and support the very ill patient. Moments of interchange between the caregiver and patient are excruciatingly poignant and painful. This illness is terrible for the patients. It robs them of much of life's normal activities and interaction, and yet the caregiver, in his or her giving, suffers terribly also - and this film delivers that message. A properly balanced interaction between caregiver and patient - something that is extremely difficult to get right - is depicted with extraordinary sensitivity by these filmmakers.’

"Natalie Boulton has also done us a great favor in writing and editing her fine book, Lost Voices, a gathering or set of stories and pictures of severely ill UK ME patients. The book was published by InvestinME in 2008. It gives the clearest picture currently available of this illness, and is the most valuable resource for coming to terms with its reality. Otherwise there are various videos on youtube made by patients, and by the providers of these very sick patients. Many of the older videos that I viewed years ago - ones that were quite frightening to me - have disappeared off the internet. Soon we will have additional contributions in this area, and they will be welcomed for what they are - clear documents of the core of this ME/CFS illness.

This, of course, is not an easy subject. It is a delicate issue - this severe private illness that takes place in darkened rooms - and from many points of view. But I think we have to have the courage to put pictures and videos - with clear explanations - out into the world in order to show the serious consequences of this illness. This illness needs a face, a real face.

I was in the conference hall in London several years back when Dr. Kenny de Meirleir showed videos of desperately ill, bed bound patients in Norway. The video was extreme, showing a patient lying in a bed in a darkened room, with a feeding tube, wearing a blinder and ear protectors. The sheets were suspended above the patient due to intolerance of the weight and pain of the sheets. It was a riveting, terrifying video, an image straight out of Dante. At the same time, Dr. de Meirleir had a young woman speak about her "walled up" sister, who she had not seen in four years - even though they lived in the same house. It was easy to sense that this presentation shocked the audience, an audience consisting of patients or those familiar with the illness. It was as if Dr. de Meirleir had done something inappropriate. But for me, it was a revelation, and that moment has percolated in my mind ever since.

How can this illness be presented to the uninformed - doctors, researchers, journalists, friends and families - in a profound way? I think you have to go "to the core". It is like going inside of the smashed nuclear reactor and viewing the exposed fuel rods.

Certainly, at the moment, the face of this illness has not registered with the public at large, and listing a long list of symptoms is not going to cut it. I want a video in my hand that depicts the "very bottom" - a video that I can hand to Dr. Harvey Alter and say : "Dr. Alter, take a look at this." - and hand it to any number of people with the same intention. There is a need to provoke people into the recognition of the true devastation that this illness inflicts on patients - and caregivers.”

Such were some of my comments from the past. If I ever had a conspicuous idea about this illness it is to study the severity of it. Hopefully things are about to change in this regard and I will write more about this soon.

In the meantime, I have five or six ME/CFS friends who have made substantial improvement in the last few years. Most had the illness at a moderate to serious level and were disabled in one way or another, suffering serious consequences to their lives. Each of them pursued various avenues to betterment and there was no commonality to what brought them to some betterment - and a couple to substantial betterment.  No commonality, and yet they have the same illness. Their diverse treatments included antibiotics, acupuncture, Valtrex, methylation supplements, uv light therapy, thyroid regulation, dietary changes, Chinese herbs, jin shin jyutsu, ozone therapy - and cannabis.  Each had to find their own path through trial and error. This is an important bit of information.

Yesterday I read this article, which I found of interest.

Mitochondria

Recent events have gotten me to focus again on mitochondria and its relation to ME. None of the following is presented as medical advice or guidance. I am not a doctor and I do not want to be one. On the other hand, it is worth noting that those with ME are "on their own" when it

comes to medical diagnosis and treatment. The situation for ME sufferers is worse than the 19th century, when physicians at least would ply their trade.

Dr. Sarah Myhill's website, perhaps the most extensive ME website on the internet, has ample information on the critical role that mitochondria play in ME. It is a great starting point. Another informative article is by Dr. David Bell, and can be found in his Lyndonville News here. Dr Bell, an excellent clinician trying to find answers, has had a long-standing interest in the role of mitochondria in ME.

Various clinicians - Dr Joseph Brewer, Dr Sarah Myhill, Dr Paul Cheney - believe that mitochondrial irregularities play a part - perhaps a very large part - in ME/CFS. You can read an article by Dr. Myhill here. In this article Dr. Myhill outlines how mitochondrial failure plays such a very big role in ME. (Incidentally not everyone has caught on to this idea.)

Dr. Myhill collaborated with Dr. John McLaren Howard and Dr. Norman Booth in an important study published in January 2009. This paper, which can be viewed here, was presented by Dr. Booth at the IACFS conference in Reno, NV in 2009. A short article on these three researchers is available here.

Dr. John McLaren Howard is a real unsung hero in ME research. Dr. Howard co-founded Biolab in London (with Dr. Stephen Davies). Prior to retiring from Biolab a few years ago, Dr. Howard pioneered some very important testing in the area of mitochondria and ME. He has continued to do these tests at Acumen lab in Cornwall. His son Mark continues to work as Manager of Biolab.

Dr Myhill's website gives a good explanation of what Acumen is looking for in their testing.

The test itself is relatively easy to do. I believe my daughter was the first person from the US to do this test, back in 2007. In crude terms the test measures ATP function (the rate at which it is recycled into cells) and the efficiency with which ATP is made from ADP. Further testing looks at various blockages to the transport of ATP and ADP. Here is an example of an ATP results page:

The blood test requires one heparanised and one EDTA tube, shipped ambient via Fedex to Acumen lab in the UK. USA Fedex shipments have to be sent to Acumen labs, c/o Cameras Plus, 17A Gold Street, Tiverton, Devon UK EX16 6QB. The samples have to be shipped "international priority" which will get them to Dr. Howard in 48 hours. They need to be shipped in an insulated pack with the proper paperwork. Fedex will help with the international shipping label. They will not help with the packaging in any way. A triplicate copy of an international waybill needs to be filled out in a specific way, the process of which can also be learned through the Fedex site. If the blood is drawn into the correct tubes, if the shipment is packed according to international Fedex procedures, if the paperwork is filled out properly, the sample will breeze through customs to Acumen labs in a timely fashion. Some care has to be taken in these matters.

The test can be done through Dr. Myhill. She will write a particularized summary that is very useful. She has seen hundreds of these tests and works closely with Dr. Howard.

Rich van Konynenburg's thoughts (always welcome) on mitochondria and ME can be seen on the Phoenix Rising forum. This ME/CFS information site was founded by Cort Johnson. This website provides us all with much needed information and connections - and is an ongoing, necessary resource. Not a day goes by that I do not read it.

The big question is, once the specific mitochondria problems are identified, can these deficiencies be rectified? As with all matters with ME, the proof is in the pudding. It is trial and error - but at least the patient has a target, and a means of measurement and tracking. Many people have been helped by this test and its targeted treatment.

Is it possible that such sharp and diverse minds as Myhill, Cheney, Howard, Booth, Bell, and Brewer can be gathered around a subject - mitochondrial failure - and that there be nothing there? No, I do not think so.

The interesting thing about mitochondria dysfunction or illness in general is that it is viewed as a disease - as opposed to ME, which is viewed as nothing. At the moment there is broad attention being paid to mitochondrial diseases and mitochondrial dysfunction, and this reality opens up an entire area on to which ME might be able to piggyback. One of the greatest hopes for ME patients is that something will slop over from another research area - HIV, cancer, mitochondria, MS, stem cell - and inadvertantly land in the lap of ME.

Several national mitochondrial disease websites can be viewed here and here.

The proposed intervention, tailored by the physician to the particular needs of the patient, revolve around what is know as the "mitochondria cocktail". Dr. Myhill stumbled upon mitochondria support through the research of Dr. Stephen Sinatra, the American metabolic cardiologist. The mitochondrial cocktail consists of various supplements. These include NAD, Co-Q10, d-ribose, carnitine, Idebenone, b2 (riboflavin), b1 (thiamine), creatine, and magnesium and b12 injections. A good webpage that covers some of these supplements is this Medscape article. Each patient's cocktail is particularized - either by a physician or by trial and error. The experienced patient, whether with lyme or ME or both, will be able to tell what works for them, and what doesn't, thus devising their own balanced protocol.