Google translation of the blogpost by Michael Silvestri
http://pestosilvestri.blogspot.se/2014/11/om-sjukdomen-me-hos-barn-och-unga.html
( I made some shorter paragraphs than in the original text to make it easier to read )
http://pestosilvestri.blogspot.se/2014/11/om-sjukdomen-me-hos-barn-och-unga.html
Thursday, November 13, 2014
On the disease ME in children and young
Yesterday I was a moderator at a very important and interesting seminar on ME (myalgic encephalomyelitis) in children and adolescents. It was arranged by the National Association for ME patients, RME.
The president of RME Stockholm, Henrik Fransson, welcomed along with the outgoing County Commissioner Stig Nyman (KD) took the opportunity to give a description of the position of the ME-care in California. I will return to it in a separate blog post.
The program is otherwise included presentations by researchers and clinicians from the US and UK, as well as a nice - and actually hopeful - description of what it is like to be young ME patients. In the latter case, it was Nathalie Gillberg, 14, and her mother Camilla who shared their experiences.
First out of the international speakers were Dr. Peter Rowe from Johns Hopkins Children Center in Baltimore, USA. Peter gave a detailed description of orthostatic intolerance, ie, the inability to stand up or be in the upright position. A symptom that is familiar to many ME patients.
Dr. Rowe touched both dietary aspects, eg milk allergy, but also another disease, Ehlers Danlos Syndrome (EDS), where the protein collagen is more or less the defect which may affect e.g., blood vessel elasticity. The latter, said Dr. Rowe, may in turn affect the distribution of blood in the body, such as manifested in the right orthostatic intolerance. What is interesting here is that the diagnoses EDS and ME certain extent seem to be linked.
The next speaker was Dr Nigel Speight from The University Hospital of North Durham, UK. Nigel stated directly that he is not academics (researchers), but he has 30 years of experience in clinical work, which includes a large number of ME patients, 700 if I get it right. Enough so important qualifications must say!
Among them are 30 who have been court cases where the social authorities moved in and tried to forcibly take care of children because they have not understood what ME is. In one case (or more?) Had made the diagnosis Munchausen by Proxy which, if properly addressed, can save the child's life, but if incorrectly set for an ME sick child can be quite devastating detention and improper care, etc .. .
Dr. Speight was sure that today there is no real treatment for ME. Therefore, he argued that instead we should speak of "management", ie, to "manage" the disease as best they can based on what we know.
At the same time, he stressed that it is important for health care is: "Do No Harm", ie, do no harm!
Unfortunately, it is enough so that the level of knowledge on the whole is so low in health care that the risk is that ME patients can have their disease worsening rather than mitigated by incorrect treatment procedures. Of course it is not acceptable!
In that context it may be mentioned that Dr. Speight described the treatment modalities cognitive behavioral therapy (CBT) and Graded Exercise Treatment (GET) that greatly overestimated the basis of proven efficacy.
Instead, he made it clear that ME is a "genuine organic condition", which I would freely translate to a true biomedical condition. And, as an example, at least in some cases successful form of treatment, mentioned Dr. Speight immunoglobulin, ie, giving the patient a mixture of antibodies.
Based on his extensive clinical experience gave Dr. Speight examples of both bright, hopeful cases where the young patient recovered, but also deeply tragic cases where things have gone really bad.
Last out of the physicians was Dr. Amolak Bansal from St Helier Hospital, Carshalton, UK. I had the privilege of listening to Dr. Bansal already in the spring, at Invest in ME in London, and then I thought it was extremely apologetic that he had only 15 minutes available. Therefore, it was gratifying that he had nearly an hour to describe the immunological, viral and endocrinological aspects of the disease.
Dr. Bansal said that the UK is estimated 0.2-0.4% of the population have ME. To my knowledge, this is in line with the corresponding estimates in the United States (about 0.4%). Translated into Swedish conditions, it would mean that about 40 000 Swedes have the disease ME, and these are then 8000 in Stockholm County. A significant proportion of the population!
ME appears to be more common among women (4 times more common than in men), and the disease onset around 20-45 years of age. An interesting observation that research has shown is that the diagnosis of ME is linked to specific personality traits. What these are, unfortunately, we could not get into, but in context it may be mentioned that ME patients found to have a higher average IQ compared to the normal population (!)
Dr. Bansal described the different viruses and other infectious agents that in one way or another have been associated with ME, but mainly he continued to Epstein Barr virus (EBV), a member of the herpesvirus family. Common to herpesviruses (including herpes simplex, EBV and chickenpox virus, VZV) is that there are viruses that for thousands of years have adapted to humans. This means that when we are infected with such a virus so we carry since the virus (usually latent) for the rest of their lives.
Particularly interesting with EBV is that this virus infects B lymphocytes, ie by immune cells producing antibodies and the virus has the ability to transform B lymphocytes to a kind of immortal cancer cells. Therefore it is interesting that "immunomodulatory" treatment with immunoglobulin or Rituximab seems to have a beneficial effect on the ME patient's condition.
But Dr Bansal had time during his presentation describing how complex picture of ME is based solely on an immunological (and microbiologically) perspective. In a conversation we had after the seminar, he was also clear that in the case of, for example, Rituximab, so definitely needed more research before we can say anything with certainty about the possible efficacy and safety relating to the treatment option.
As the last speaker of the day then gave 14-year-old Nathalie Gillberg and her mother Camilla a fine, and actually hopeful description of what it is like to live with ME. Both have been diagnosed with ME. Nathalie described how her teachers and classmates at school, at home in Borås was both sympathetic and considerate when it comes to her need to sometimes be able to take a short rest, sometimes maybe "flex" with a little sleep or go home earlier, sometimes leaving gym or do easier exercises.
When it's time for the written test you can Nathalie sometimes get a customized form of examination depending on her condition. The school nurse knew about the disease ME already when Nathalie and Camilla told me about the first time. This most likely unusual, but is obviously beneficial!
An additional strength is obvious also that the mother Camilla has personal experience of the disease and carries great knowledge of it, which she gladly share to those who need it at her daughter's school.
On the positive that both Nathalie and Camilla have contact with their own physicians who exhibit good treatment with respect for the ME patient with a positive attitude towards dialogue. It contributes to a trust which is a necessary foundation for a great treat!
Camilla also mentioned that she had been involved in starting a sub-section for children / young people and parents in RME. There is also a Facebook group for these target groups.
In summary, this is a good, important seminar organized by RME. The need for more research and increased and diversified knowledge is great in general when it comes to ME. When it comes to ME in children and young so dark figure probably significant, which means that the need is even greater in this population.
The only way for us to really make progress is that we meet in different forums of this kind, and continue a constructive dialogue between patients / patient organizations, professions in health care and politicians who must make wise decisions.
Speaking of the latter so I will comment on in a later separate insert the new additional mandate of the choice of care aimed at improving rehabilitation services include ME patients.
Posted by Michel Silvestri PM. Thursday, November 13, 2014
Labels: children, CFS, ME, National Society for ME patients RME, young, Vårdval
and keep an eye on when the seminar has been hold and a video could be expected.
