Roy S
former DC ME/CFS lobbyist
- Messages
- 1,376
- Location
- Illinois, USA
This is not good. I wonder about US studies.
<http://translate.google.com/transla...=X&ei=DNh4UNu0BaTe2QXqyYGoCA&ved=0CDsQ7gEwAA>
ME patient: - We got hope, but now we face a wall of silence It is almost a year since the ME patients had hopes of a treatment. The researchers are ready to begin study but lacks money.
It is nearly a year since news of the ME breakthrough at Haukeland University Hospital <http://translate.googleusercontent.....html&usg=ALkJrhjmWYF53PU9K5ANHUkDblB-WxzuHg> came.
Cancer Doctors Fluge Øystein and Olav Mella has found what may be a possible treatment for ME and not least a possible explanation of what the disease actually is.
See also: Norwegian breakthrough can solve CFS mystery <http://translate.googleusercontent.....html&usg=ALkJrhjmWYF53PU9K5ANHUkDblB-WxzuHg>
This gave hope to the ME patients <http://translate.googleusercontent.....html&usg=ALkJrhjEL82yOLvWJa-u7UqihlojkawdhQ> across the country on a larger study that may include many more patients. It has not happened. - What does the Minister of Health? ME sufferers Petter Schjelderup (57) from Harstad was one of the subjects began to believe that he could get help. Health Minister Anne-Grete Strøm-Erichsen (AP) promised in October to follow the ME-breakthrough <http://translate.googleusercontent.....html&usg=ALkJrhjaVsD5-WU6IaoZr0aqDhPKLIj3gQ> .
- We got hope, but now we face a wall of silence, says Schjelderup. What does the Minister for 10000-15000 seriously ill people Now calls Schjelderup action Strøm-Erichsen.
Read also: Strøm-Erichsen promise to follow up on ME Breakthrough <http://translate.googleusercontent.....html&usg=ALkJrhjaVsD5-WU6IaoZr0aqDhPKLIj3gQ>
- What does the Minister for 10000-15000 seriously ill people, he asks. Something happens, but lack of money Cancer Doctors Olav Mella and Øystein Fluge the past year had a huge influx of patients who wish to be included in their studies.
After last year's breakthrough wanted the two doctors to get started with a so-called multi-center study in which more hospitals participate <http://translate.googleusercontent.....html&usg=ALkJrhjB_k-r7y73C1jowyIXDGhUEHgRxQ> , but there is no money yet.
However, they have applied for funds from sources such as the Research Council.
- If we get the funding we hope to get started on a new study. We anticipate approximately 140 patients, half of which will Rituximab and half saline, says Fluge the website of TV2
The study would include maintenance, i.e. multiple infusions over time.
See also: Missing eleven million of ME study <http://translate.googleusercontent.....html&usg=ALkJrhiuHIC43Mjgs4s68-1fhrJFY7Js7w>
In November of last year, the doctors two million to further research the health minister <http://translate.googleusercontent.....html&usg=ALkJrhh3VbpgMWgxJiWMT_2ALdjVe-C7wQ> , but still lacks a double-digit million amount before a multi-center trial <http://translate.googleusercontent.....html&usg=ALkJrhiuHIC43Mjgs4s68-1fhrJFY7Js7w> to see the light of day.
- This is a work they have done outside of his job at Haukeland University Hospital. We want to get the research continued in a slightly larger context, and to achieve that, we have allocated two million. Western Health will also use the money to continue this research, said Health Minister Anne-Grete Strøm-Erichsen to TV 2 in november.
As time goes on ME patients waiting for help. Calls for speed in processing - I have had ME for 12 years. I'm tired, says Schjelderup the website of TV2
- I calls for more speed in processing and more money for research. I am distressed that there are solutions, but nothing happens, says harstad people here.
Read also: Elene (26) recovered from ME <http://translate.googleusercontent.....html&usg=ALkJrhgvSjJDgk-dEAN1ILrUKI7xhCOr-g>
Schjelderup calls for information and assistance from the public.
- We are told that there is no treatment, he said.
Although he has tried most in an effort to stay healthy.
- I was partly set antidepressants, but it's not helped, he said. Genetic study Despite the fact that there is no money for a multi-center study yet on the other things in Haukeland.
Doctors jobs including in the laboratory to understand the disease better.
- This work will hopefully give us a better understanding of the disease mechanisms, says Fluge the website of TV2
Read also: Requires investigation of Norwegian ME treatment <http://translate.googleusercontent.....html&usg=ALkJrhj_SipNjQoFvJ3DVEDgonwMAKiNig>
In addition, we perform a study in which doctors will look at those who are genetically predisposed to the disease. It has been shown in studies that there is an inherited predisposition to ME.
- We are in the process of a genetic study in which we look at families with a clear accumulation of ME. Several such families have contacted our research group at the Cancer Department, said Fluge. - Keeps going crazy Schjelderup previously ran their own business with several employees. Today he is 100 percent disabled and living with daily pain.
- I am going mad with pain, says Schjelderup.
Also read: ME sufferers "Gunnar" was not believed - was admitted to a psychiatric <http://translate.googleusercontent.....html&usg=ALkJrhgqx8YQrJC0tQUxAEtvvlkjYSGMiw>
- It's hopeless and the worst is that you do not see any solution, he says.
Schjelderup says that he sees the disease as very disabling, but that he still considers himself lucky.
- I is in any case not to bed all the time. I manage a few hours a day, but then it stops, he says to the website of TV2
Thanks to Patricia Carter for posting this on mecfsforums
<http://translate.google.com/transla...=X&ei=DNh4UNu0BaTe2QXqyYGoCA&ved=0CDsQ7gEwAA>
ME patient: - We got hope, but now we face a wall of silence It is almost a year since the ME patients had hopes of a treatment. The researchers are ready to begin study but lacks money.
It is nearly a year since news of the ME breakthrough at Haukeland University Hospital <http://translate.googleusercontent.....html&usg=ALkJrhjmWYF53PU9K5ANHUkDblB-WxzuHg> came.
Cancer Doctors Fluge Øystein and Olav Mella has found what may be a possible treatment for ME and not least a possible explanation of what the disease actually is.
See also: Norwegian breakthrough can solve CFS mystery <http://translate.googleusercontent.....html&usg=ALkJrhjmWYF53PU9K5ANHUkDblB-WxzuHg>
This gave hope to the ME patients <http://translate.googleusercontent.....html&usg=ALkJrhjEL82yOLvWJa-u7UqihlojkawdhQ> across the country on a larger study that may include many more patients. It has not happened. - What does the Minister of Health? ME sufferers Petter Schjelderup (57) from Harstad was one of the subjects began to believe that he could get help. Health Minister Anne-Grete Strøm-Erichsen (AP) promised in October to follow the ME-breakthrough <http://translate.googleusercontent.....html&usg=ALkJrhjaVsD5-WU6IaoZr0aqDhPKLIj3gQ> .
- We got hope, but now we face a wall of silence, says Schjelderup. What does the Minister for 10000-15000 seriously ill people Now calls Schjelderup action Strøm-Erichsen.
Read also: Strøm-Erichsen promise to follow up on ME Breakthrough <http://translate.googleusercontent.....html&usg=ALkJrhjaVsD5-WU6IaoZr0aqDhPKLIj3gQ>
- What does the Minister for 10000-15000 seriously ill people, he asks. Something happens, but lack of money Cancer Doctors Olav Mella and Øystein Fluge the past year had a huge influx of patients who wish to be included in their studies.
After last year's breakthrough wanted the two doctors to get started with a so-called multi-center study in which more hospitals participate <http://translate.googleusercontent.....html&usg=ALkJrhjB_k-r7y73C1jowyIXDGhUEHgRxQ> , but there is no money yet.
However, they have applied for funds from sources such as the Research Council.
- If we get the funding we hope to get started on a new study. We anticipate approximately 140 patients, half of which will Rituximab and half saline, says Fluge the website of TV2
The study would include maintenance, i.e. multiple infusions over time.
See also: Missing eleven million of ME study <http://translate.googleusercontent.....html&usg=ALkJrhiuHIC43Mjgs4s68-1fhrJFY7Js7w>
In November of last year, the doctors two million to further research the health minister <http://translate.googleusercontent.....html&usg=ALkJrhh3VbpgMWgxJiWMT_2ALdjVe-C7wQ> , but still lacks a double-digit million amount before a multi-center trial <http://translate.googleusercontent.....html&usg=ALkJrhiuHIC43Mjgs4s68-1fhrJFY7Js7w> to see the light of day.
- This is a work they have done outside of his job at Haukeland University Hospital. We want to get the research continued in a slightly larger context, and to achieve that, we have allocated two million. Western Health will also use the money to continue this research, said Health Minister Anne-Grete Strøm-Erichsen to TV 2 in november.
As time goes on ME patients waiting for help. Calls for speed in processing - I have had ME for 12 years. I'm tired, says Schjelderup the website of TV2
- I calls for more speed in processing and more money for research. I am distressed that there are solutions, but nothing happens, says harstad people here.
Read also: Elene (26) recovered from ME <http://translate.googleusercontent.....html&usg=ALkJrhgvSjJDgk-dEAN1ILrUKI7xhCOr-g>
Schjelderup calls for information and assistance from the public.
- We are told that there is no treatment, he said.
Although he has tried most in an effort to stay healthy.
- I was partly set antidepressants, but it's not helped, he said. Genetic study Despite the fact that there is no money for a multi-center study yet on the other things in Haukeland.
Doctors jobs including in the laboratory to understand the disease better.
- This work will hopefully give us a better understanding of the disease mechanisms, says Fluge the website of TV2
Read also: Requires investigation of Norwegian ME treatment <http://translate.googleusercontent.....html&usg=ALkJrhj_SipNjQoFvJ3DVEDgonwMAKiNig>
In addition, we perform a study in which doctors will look at those who are genetically predisposed to the disease. It has been shown in studies that there is an inherited predisposition to ME.
- We are in the process of a genetic study in which we look at families with a clear accumulation of ME. Several such families have contacted our research group at the Cancer Department, said Fluge. - Keeps going crazy Schjelderup previously ran their own business with several employees. Today he is 100 percent disabled and living with daily pain.
- I am going mad with pain, says Schjelderup.
Also read: ME sufferers "Gunnar" was not believed - was admitted to a psychiatric <http://translate.googleusercontent.....html&usg=ALkJrhgqx8YQrJC0tQUxAEtvvlkjYSGMiw>
- It's hopeless and the worst is that you do not see any solution, he says.
Schjelderup says that he sees the disease as very disabling, but that he still considers himself lucky.
- I is in any case not to bed all the time. I manage a few hours a day, but then it stops, he says to the website of TV2
Thanks to Patricia Carter for posting this on mecfsforums