Friday, 17 February 2012

MECFSAlert YouTube Channel

A currently active YouTube channel dedicated to furthering awareness of M.E. and associated illnesses is MECFSAlert.


The channel is 'run' by 72-year old Llewelyn King, a Brit who has a journalistic background (he currently writes for the White House Chronicle - on all journalistic topics, not just M.E.), with his co-host, Deborah Waroff, an M.E. sufferer in the US. MECFSAlert can be contacted by email: mesfcalert@gmail.com


Perhaps the main point of 'newness' about their channel is their active travel to meet and interview some key people involved in M.E. research and treatment in the US. I will provide a summary of each (most) of the episodes that they have so far made.




EPISODE 1:



Interview with Dr. Derek Enlander, a former virology specialist from Belfast, who now practices in the US, and who believes M.E.'s root lies in a compromised immune system.




Mention is made of Ampligen (this drug reappears in EPISODE 6), an infusion medication taken twice a week, that has been shown to help some M.E. sufferers. The exact data is unclear and side-effects are vaguely covered.




They talk about cluster cases of M.E. including members of the same family, and people living in the same communities. They refer to the outbreak of M.E. among a group of doctors working at the Royal Free Hospital in London in 1955. Could M.E. therefore be an infectious disease? If it were, posits Dr. Enlander, there would be much more than 2% of the population afflicted by this disease. What is more likely is that there is a genetic link - specifically an abnormal genome affecting the transponder in the methylation cycle in the immune system.


Dr. Enlander does not advocate Britain's National Health Service 'solution' of Graded Exercise Therapy (GET) or Cognitive Behavior Theory (CBT). Too much exercise has been shown to be consistently detrimental among M.E. patients, and psychological aspect is not the cause of M.E.



EPISODE 2:


Highlights the funding deficits for M.E. by US Federal government. As a comparison, funds of US$400 per multiple sclerosis sufferer is allocated. For M.E. that figure goes down to US$1.25 per M.E. sufferer.


EPISODE 4:


A 300-person M.E. outbreak in Lake Tahoe in the 1980s.


They visit the Whittemore-Peterson Institute in Nevada. This institute was founded by Annette Whittemore, whose daughter was diagnosed with M.E. at the age of 12. (The daughter is interviewed in EPISODE 6). The aim of the Institute is to take information from M.E. patients and transfer it to a research institute. They currently have a clinical lab attached to a medical practice, and located next to the campus of the medical school of the University of Nevada, Reno.


Annette Whittemore mentions the need of more funding, and coincidentally, earlier in the day, my attention was drawn to a Facebook posting of an article that involves a Mr. Harvey Whittemore, a Nevada lobbyist, and his embezzlement and misallocation of funds from various enterprises. This is the husband of Annette Whittemore. It's sad to think that corruption could be involved in what appears to be a genuine attempt to do something for the good of medical research, and there is certainly no doubt about how the daughter of Annette and Harvey has suffered from M.E.


Annette speaks of the institute being in its early days, but that it does have registered patients in attendance. Their website is here, and they do have a Facebook page, too.


EPISODE 5:


Dr. Vincent Lombardi, Research Director of the Whittemore Peterson Institute. He also talks about funding difficulties. His interest seems to lie in studying interferon pathways. M.E. patients unexpectedly had lower interferon levels than control patients. A basal level of interferon is needed to activate the immune system - essentially proteins created by host cells to combat viruses.



EPISODE 6:


Interview with Andrea Whittemore-Goud, daughter of Annette Whittemore. In connection with EPISODE 1, Andrea has been a long-term user of Ampligen (at least 8 years). Of interest, is that she developed a period of seizures, which may or may not have been a consequence of using Ampligen (she doesn't state this connection herself, though). Andrea says that since the institute's foundation, she has found many more options available to her to try and treat M.E.


Andrea talks about now being able to go to work, although on further elaboration, her work involves maintaining the institute's Facebook page. She is also using an oxygen machine, and she does yoga.



EPISODE 7:



Dr. Robert Fredericks, doctor at the Whittemore Peterson Institute. He states that the term 'health' cannot be applied in the same way to every individual.



EPISODE 8:



In Washington, DC. Dr. Leonard Jason, Director for the Center for Community Research, linked to Depaul University, Chicago, is himself an M.E. sufferer.



He mentions his effort to get a better statistic for the actual numbers of M.E. sufferers. However, the consequence of announcing a higher number of M.E. sufferers can also be attributed to broadening the definition of M.E.



When asked who he believes is at the forefront of M.E. research, Dr. Jason says he believes the Japanese are the leading researchers.



EPISODE 9:



Continuing the interview with Dr. Jason.



Questions are asked as to whether Asian nations might have a different approach to treating illnesses, from which Western countries could learn and benefit from. Dr. Jason mentions a peer-reviewed journal which discusses the success of the use of Qi-Gong and meditation among M.E. sufferers. Qi-Gong is in very simple terms (Qi-Gong practitioners will shout 'nooooo' here) a bit like Tai-chi, so along with meditation, it has a focus on trying to positively channel the energy of the body, rather than being a medicine-based treatment.



Dr. Jason mentions that in US community studies, people in lower-income groups and ethnic minority groups can be recorded as having higher incidences of M.E.



EPISODE 10:



Continuing the interview with Dr. Jason.



M.E. costs the US government some US$20 billion per year in healthcare and lost work time.



Environmental factors as the cause of M.E.: the re-finishing of a school floor and the re-flooring of an orchestra practice hall respectively caused a group of people linked to those environments to fall sick. (Note, in an earlier post, I had cited how the likes of formaldehyde has already been recognized as a trigger for M.E.)



EPISODE 11:



Interview with Robert Miller, a former coal miner in Utah who came down with M.E. in 1982.



Initially, Robert was put under extensive cancer testing, as cancer runs in his family, but results showed up nothing.



Robert met a lymphoma sufferer who talked about the energy benefits he was gaining from Rituxan (Rituximab). This drug came out of Norway. It depletes the system of all B-cells, the theory being that it kills viruses that live in the B-cells. The drug is given by infusion. However, if you want to get your own supply of Rituxan, a single infusion costs US$70,000. (I hope to cover Rituxan some more later on - Don't forget, I still have to cover D-Ribose, too).



Robert took Ampligen for four years. He says that he did well with Ampligen, and eventually stopped taking it. Around four years after ceasing Ampligen, he got a relapse.



EPISODE 12:



Interview with Torsten Porwol, linked to the Norweigan company manufacturing Rituxan. He talks about the clinical trial in which 67% of subjects reported positive results.



Again, the difficulties are mentioned in securing funds to fully test and develop the drug further, particularly in regards to its potential benefits in M.E. sufferers. Roche and Glaxo already have access to the compounds and Rituxan is approved as a cancer drug in the US. It also has FDA approval as a lupus medication.



Why is this drug so expensive? Porwol explains how much money is needed by the pharmaceutical companies to develop and study a drug, that the cost to the customer is justified in this respect.



EPISODE 13:



A skit highlighting the CDC's advice to physicians that M.E. is a psychiatric condition.



EPISODE 14:



Testimonial from an M.E. sufferer currently participating in an Ampligen trial.



EPISODE 15:



Testimonial from a woman who has M.E. and of her son who also had M.E. and died in 2005. The pathologist found a virus infection during his autopsy, but couldn't clearly determine which virus had led to his death.



EPISODE 16:



Testimonial from an M.E. sufferer from Canada. She had mononucleosis in 6th grade and has been on an up and down battle ever since. She tells how it was very difficult to get any treatment for her M.E. while classed as a 'junior', and had been shunted off to several psychiatrists. The delay in getting correctly diagnosed also didn't let her consider pacing, hence leading to regular flare ups.



EPISODE 17:



EPISODE 18:



Visit to the Senate in Washington, DC. Interview with Senator Tom Harkin, Chairman of the HELP Committee. He points out that Congress controls all the money, so Congress has more power than the Senate to make effective change in areas such as medical provision. His wish is for a greater cross-disciplinary approach for illnesses such as M.E. and more diverse training among trainee doctors.





MECFSAlert are up to 18 Episodes and seem set to continue. Good job!

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