IiMER RESPONSE TO INSTITUTE OF MEDICINE DOCUMENT
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness Click for IiMER Report
IiME Newslett March 2015:
Invest in ME Research have submitted the following response to the Institute of Medicine document “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”
Invest in ME Research have viewed the full report and commented on it.
Our evaluation of the report is held in the pdf document link below.
Here is the pdf version of our submission 
973kb
Last Update March 2015
DONATE via JustTextGiving
Just Text Giving Donate to the Invest in ME Biomedical Research Fund Text IBRF33 £2 / £5 / £10 to 70070 to donate now -
e.g. text the following to 70070
IBRF33 £5
Donate to biomedical research
Donate via Paypal
Set up a fundraising page
Remember someone by setting up a special page
Set up a Direct Debit
or
See our JustGiving Pages here - click here
DONATE to the BIOMEDICAL RESEARCH FUND
The Biomedical Research Fund (BRF) provides a means to fund biomedical research into ME and avoid the constraints or influence of policies which do not focus on researching ME properly. In addition education is a major part of biomedical research. Students need to attend conferences such as ours, healthcare professionals need to have the latest research presented to them regarding ME and researchers themselves need to meet, network and establish working relationships with each other. Researchers must also begin sharing data and working in co-operation.
Our aim is to build sustainable and developing collaborations with translational biomedical research at the heart of all research. The Invest in ME Research Biomedical Research Fund will be used for the following -
-
Biomedical Research into ME
-
Education Regarding ME
-
Conferences related to ME
-
Expenses in Sponsoring Presenters to Speak at Conferences
-
Cost of sponsoring PhD students performing biomedical research into ME
-
Set up and running of ME Clinic treating severely affected patients with ME
-
Assisting with equipment and other costs of researchers performing purely biomedical research into ME
Currently the focus of the BRF is toward the proposal for a UK examinations and research facility for ME. If you would like to help in raising funds please contact us.
To donate to the Invest in ME Research "Can Do" biomedical research fund please use the links above.
DONATE to the RITUXIMAB TRIAL PROJECTS
Make a one-off donation via JustGiving
You can use your credit card or PayPal and there is an option to use Gift Aid.
Make a one-off donation via credit card or Paypal
You can use your credit card or PayPal. If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
Other Ways to Contribute to the Rituximab Clinical Trial
To read more about the UK Rituximab Clinical Trial projects and ways to donate please go to the UK Rtiuximab Trial web site click on this this link.
HELP US FUND INVEST in ME RESEARCH CONFERENCES
The Invest in ME International ME Conferences are CPD accredited biomedical conferences which provide a platform for the latest information and biomedical research on myalgic encephalomyelitis. They attract the most renowned speakers from all over the world - and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME. They provide an excellent insight into these areas and the issues currently facing the healthcare and ME patient communities. Our conferences and, later, our Colloquiums have been facilitating interaction and sharing of information between patients, researchers and clinicians for almost 10 years.
The Invest in ME International Biomedical Research into ME Colloquiums began as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas. Over the years this has broadened to sharing of experiences, data and plans. The charity has now put in place the key building blocks to take ME research into the 21st century with high-quality biomedical research in world class organisations being performed by some of the best researchers.This is a basis for a strategy of international biomedical research which will hold far greater promise of creating proper funding and awareness of biomedical research into ME.
To see what has been performed over ten years please go to this link.
Easyfundraising
provides a FREE service where you can shop with your favourite online stores and at no extra cost raise funds for Invest in ME.
You still shop directly with each retailer as you would normally, but simply by using the links from this site first, each purchase you make will generate a cashback donation to Invest in ME.
Click on the image above.
Surf the Web with Every Click
By using Every Click (click here) and making IiMER your charity of your choice then you can earn money for IiME.
This can really make a difference to Invest in ME Research.
This is a really easy way to assist funding of biomedical research.
Buy our wrist bands
to support biomedical research.
An easy way to spread awareness.
£1 each - (click on our logo above)
Make a One-off Donation via Credit Card or Paypal
Make a one-off donation via credit card or Paypal
You can use your credit card or PayPal. If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
Make a Monthly Donation via Credit Card or PayPal
Make a monthly donation via credit card or PayPal
If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
DONATE Via JustTextGiving Using Yyour Mobile Phone
DONATE Via A CHEQUE
Send a cheque
You can use your credit card or PayPal and there is an option to use Gift Aid.
Please make out your cheque to Invest in ME,
say in the cover letter it's for the Rituximab trial and mail it to:
Invest in ME
PO Box 561
Eastleigh
Hampshire SO50 0GQ
UK
If you are a UK taxpayer, please complete our
Gift Aid form and enclose it with the cheque.
http://www.investinme.org/Documents/Gift%20Aid%20Form%20appendix_b1.pdf
HELP US FUND INVEST in ME RESEARCH CONFERENCES
6/ Via Bank Transfer To make a direct bank to bank transfer of funds then this is the bank account for the IiME UK rituximab trial -
| Bank Name | LLOYDS BANK |
| Bank Address |
36 Market Street Eastleigh Hampshire SO50 9YT England |
| Lloyds Bank Sort code | 30-92-94 |
| Account Number | 30061668 |
| Account Name | IiME Biomedical Research Fund RITUXIMAB |
| Bank’s account number (IBAN) | GB63 Loyd 3092 9402 2526 85 |
| BIC/SWIFT number |
BIC: LOYDGB21209 |
Easyfundraising
TRF - The Recycling Factory
GIVE A CAR
E-baY
- Start selling on eBay
- Sign into your eBay account and click "sell" to list an item, just as you normally do.
- Choose to donate
- In the "Pricing & Duration" section of the Sell Your Item form, choose "Donate a percentage of sale to charity" to launch the eBay for Charity feature.
- Select a charity and donation percentage
- Find Invest in ME Research in the MissionFish charity directory.
- Then choose how much of your final sale price (10%-100%) you would like to donate. A £2 minimum donation applies.
- Finish your listing
- Once you select Invest in ME Research as the charity to benefit from your listing, review your listing details and submit it as usual.
Candle House
Size 11.5cm by 17.2 cm
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
All I Want for Christmas
Size 15cm by 15cm
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Candles
Size 15cm by 15cm
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Joy
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Tealights
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Jingle Bells
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Christmas Bauble
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Please remember to click on the actual price for your country in the drop-down box
Science, Politics and ME
The book has not yet been published. Please return here at a later date.
International Conference DVDs
Please note:
This is for purchasing conference DVDs for UK delivery.
Please use the relevant option for delivery to Europe or outside Europe.
For more details about each conference please go to the coference website - click here
More details of previous conferences at this link - http://www.investinme.eu/IIMEC12-pastconferences.shtml
CCC Guidelines
Copies of CCC Guidelines may be ordered by contacting Invest in ME Research at this email address - info@investinme.org
Please note:
We order batches of guidelines depending on requirements.
ICC Guidelines
Copies of ICC Guidelines may be ordered by contacting Invest in ME Research at this email address - info@investinme.org
Please note:
We order batches of guidelines depending on requirements.
HELP US FUND INVEST in ME RESEARCH CONFERENCES
The Invest in ME Research International ME Conferences are CPD accredited biomedical conferences which provide a platform for the latest information and biomedical research on myalgic encephalomyelitis. They attract the most renowned speakers from all over the world - and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME. They provide an excellent insight into these areas and the issues currently facing the healthcare and ME patient communities. Our conferences and, later, our researchers' 'Colloquiums have been facilitating interaction and sharing of information between patients, researchers and clinicians for over 12 years.
The Invest in ME Research International Biomedical Research into ME Colloquiums began as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas. Over the years this has broadened to sharing of experiences, data and plans. The charity has now put in place the key building blocks to take ME research into the 21st century with high-quality biomedical research in world class organisations being performed by some of the best researchers. This is a basis for a strategy of international biomedical research which will hold far greater promise of creating proper funding and awareness of biomedical research into ME.
To see what has been performed over ten years please go to this link.
HELP US FUND RESEARCH and ADVOCACY
Donating to Invest in ME Research means that the donation will go towards one of a variety of activities which are part of our objective to build a foundation of biomedical research into ME.
IiMER does not pay any salaries so all funds are directed to where they can be used effectively to reach our objectives.
To see what has been performed over more than a decade please go to this link.
DONATE to the BIOMEDICAL RESEARCH FUND
The Biomedical Research Fund (BRF) provides a means to fund biomedical research into ME and avoid the constraints or influence of policies which do not focus on researching ME properly. In addition education is a major part of biomedical research. Students need to attend conferences such as ours, healthcare professionals need to have the latest research presented to them regarding ME and researchers themselves need to meet, network and establish working relationships with each other. Researchers must also begin sharing data and working in co-operation.
Our aim is to build sustainable and developing collaborations with translational biomedical research at the heart of all research. The Invest in ME Research Biomedical Research Fund will be used for the following -
-
Biomedical Research into ME
-
Education Regarding ME
-
Conferences related to ME
-
Expenses in Sponsoring Presenters to Speak at Conferences and Colloquiums
-
Cost of sponsoring PhD students and postdocs performing biomedical research into ME
-
Set up and running of ME Clinical services
-
Assisting with equipment and other costs of researchers performing purely biomedical research into ME
Currently the focus of the BRF is mainly toward the research in the Centre of Excellence for ME project. If you would like to help in raising funds please contact us.
To donate to the Invest in ME Research "Can Do" biomedical research fund please use the links above.
HELP US FUND RESEARCH and ADVOCACY
Donating to Invest in ME Research means that the donation will go towards one of a variety of activities which are part of our objective to build a foundation of biomedical research into ME.
IiMER does not pay any salaries so all funds are directed to where they can be used effectively to reach our objectives.
To see what has been performed over more than a decade please go to this link.
DONATE to the B-Cell / RITUXIMAB TRIAL PROJECTS
Make a one-off donation via JustGiving
You can use your credit card or PayPal and there is an option to use Gift Aid.
Make a one-off donation via credit card or Paypal
You can use your credit card or PayPal. If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
Other Ways to Contribute to the B-cell Research and Rituximab Clinical Trial
To read more about the B-cell research and the UK Rituximab Clinical Trial projects and ways to donate please go to the microsite click on this this link.
DONATE to the GUT MICROBIOTA PROJECTs
The UK Gut Microbiota Research projects aim to find whether there is evidence of a leaky gut in ME patients, to test the hypothesis that ME is an autoimmune disorder originating in the gut as a consequence of altered intestinal permeability, to investigate whether the underlying causes of ME are related to the presence of specific virus populations within the gut virobiota, and aim to answer important questions concerning the role of the enteric phage/virome in ME .
These are research projects in the developing UK Centre of Excellence for ME.
To read more about the UK Gut Microbiota projects please go to this link.
DONATE for CENTRE of EXCELLENCE for ME
The Centre of Excellence for ME is a project proposed by Invest in ME Research to establish a hub for biomedical research into ME. Please support us
This link takes one to the C of E for ME site please go to this link.
DONATE for MEDICAL STUDENTS in RESEARCH into ME
The Centre of Excellence for ME is a project created by Invest in ME Research. Part of this project proposal is the inclusion of medical students who will intercalate during their fourth year of study and participate in the biomedical research.
To read more about the medical students in ME please go to this link.
DISCLAIMER
The pages on this web site are offered as a free access information provider.
The views expressed on this web site by contributors and others do not necessarily represent those of Invest in ME Research.
No medical recommendations are given or implied.
Patients with any illness are recommended to consult their personal physician at all times.
The views expressed at the Invest in ME/Invest in ME Research International ME Conferences and at other Invest in ME/Invest in ME Research conferences and Colloquiums by the presenters and delegates to the Colloquiums/Conferences and any information material distributed are their own personal opinions that are not necessarily shared or endorsed by the Trustees of the charity.
Invest in ME/Invest in ME Research accept no responsibility for the views expressed or any subsequent action taken.
The contents of any presentation should not be deemed to be an endorsement, recommendation or approval of such content by Invest in ME/Invest in ME Research.
The materials presented at the Invest in ME/Invest in ME Research International ME Conferences or by contributors to this web site do not constitute medical advice.
No medical recommendations are given or implied by Invest in ME/Invest in ME Research.
Any person registering or attending the conferences or who use information from this web site and who may take any action or consider medical treatment or referrals should take detailed advice from their own medical practitioner always. Invest in ME/Invest in ME Research disclaims any implied guarantee about the accuracy, completeness, timeliness or relevance of any information contained in this website.
DONATE via JustTextGiving
Just Text Giving Donate to the Invest in ME Biomedical Research Fund Text IBRF33 £2 / £5 / £10 to 70070 to donate now -
e.g. text the following to 70070
IBRF33 £5
Donate to biomedical research
Donate via Paypal
Set up a fundraising page
Remember someone by setting up a special page
Set up a Direct Debit
or
See our JustGiving Pages here - click here
DONATE to the BIOMEDICAL RESEARCH FUND
The Biomedical Research Fund (BRF) provides a means to fund biomedical research into ME and avoid the constraints or influence of policies which do not focus on researching ME properly. In addition education is a major part of biomedical research. Students need to attend conferences such as ours, healthcare professionals need to have the latest research presented to them regarding ME and researchers themselves need to meet, network and establish working relationships with each other. Researchers must also begin sharing data and working in co-operation.
Our aim is to build sustainable and developing collaborations with translational biomedical research at the heart of all research. The Invest in ME Research Biomedical Research Fund will be used for the following -
-
Biomedical Research into ME
-
Education Regarding ME
-
Conferences related to ME
-
Expenses in Sponsoring Presenters to Speak at Conferences
-
Cost of sponsoring PhD students performing biomedical research into ME
-
Set up and running of ME Clinic treating severely affected patients with ME
-
Assisting with equipment and other costs of researchers performing purely biomedical research into ME
Currently the focus of the BRF is toward the proposal for a UK examinations and research facility for ME. If you would like to help in raising funds please contact us.
To donate to the Invest in ME Research "Can Do" biomedical research fund please use the links above.
DONATE to the RITUXIMAB TRIAL PROJECTS
Make a one-off donation via JustGiving
You can use your credit card or PayPal and there is an option to use Gift Aid.
Make a one-off donation via credit card or Paypal
You can use your credit card or PayPal. If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
Other Ways to Contribute to the Rituximab Clinical Trial
To read more about the UK Rituximab Clinical Trial projects and ways to donate please go to the UK Rtiuximab Trial web site click on this this link.
HELP US FUND INVEST in ME RESEARCH CONFERENCES
The Invest in ME International ME Conferences are CPD accredited biomedical conferences which provide a platform for the latest information and biomedical research on myalgic encephalomyelitis. They attract the most renowned speakers from all over the world - and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME. They provide an excellent insight into these areas and the issues currently facing the healthcare and ME patient communities. Our conferences and, later, our Colloquiums have been facilitating interaction and sharing of information between patients, researchers and clinicians for almost 10 years.
The Invest in ME International Biomedical Research into ME Colloquiums began as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas. Over the years this has broadened to sharing of experiences, data and plans. The charity has now put in place the key building blocks to take ME research into the 21st century with high-quality biomedical research in world class organisations being performed by some of the best researchers.This is a basis for a strategy of international biomedical research which will hold far greater promise of creating proper funding and awareness of biomedical research into ME.
To see what has been performed over ten years please go to this link.
Easyfundraising
provides a FREE service where you can shop with your favourite online stores and at no extra cost raise funds for Invest in ME.
You still shop directly with each retailer as you would normally, but simply by using the links from this site first, each purchase you make will generate a cashback donation to Invest in ME.
Click on the image above.
Surf the Web with Every Click
By using Every Click (click here) and making IiMER your charity of your choice then you can earn money for IiME.
This can really make a difference to Invest in ME Research.
This is a really easy way to assist funding of biomedical research.
Buy our wrist bands
to support biomedical research.
An easy way to spread awareness.
£1 each - (click on our logo above)
Make a One-off Donation via Credit Card or Paypal
Make a one-off donation via credit card or Paypal
You can use your credit card or PayPal. If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
Make a Monthly Donation via Credit Card or PayPal
Make a monthly donation via credit card or PayPal
If you are a UK tax payer then you can gift aid the donation - please contact us via email to state that you wish for the donation to be gift aided.
DONATE Via JustTextGiving Using Yyour Mobile Phone
DONATE Via A CHEQUE
Send a cheque
You can use your credit card or PayPal and there is an option to use Gift Aid.
Please make out your cheque to Invest in ME,
say in the cover letter it's for the Rituximab trial and mail it to:
Invest in ME
PO Box 561
Eastleigh
Hampshire SO50 0GQ
UK
If you are a UK taxpayer, please complete our
Gift Aid form and enclose it with the cheque.
http://www.investinme.org/Documents/Gift%20Aid%20Form%20appendix_b1.pdf
HELP US FUND INVEST in ME RESEARCH CONFERENCES
6/ Via Bank Transfer To make a direct bank to bank transfer of funds then this is the bank account for the IiME UK rituximab trial -
| Bank Name | LLOYDS BANK |
| Bank Address |
36 Market Street Eastleigh Hampshire SO50 9YT England |
| Lloyds Bank Sort code | 30-92-94 |
| Account Number | 30061668 |
| Account Name | IiME Biomedical Research Fund RITUXIMAB |
| Bank’s account number (IBAN) | GB63 Loyd 3092 9402 2526 85 |
| BIC/SWIFT number |
BIC: LOYDGB21209 |
Easyfundraising
TRF - The Recycling Factory
GIVE A CAR
E-baY
- Start selling on eBay
- Sign into your eBay account and click "sell" to list an item, just as you normally do.
- Choose to donate
- In the "Pricing & Duration" section of the Sell Your Item form, choose "Donate a percentage of sale to charity" to launch the eBay for Charity feature.
- Select a charity and donation percentage
- Find Invest in ME Research in the MissionFish charity directory.
- Then choose how much of your final sale price (10%-100%) you would like to donate. A £2 minimum donation applies.
- Finish your listing
- Once you select Invest in ME Research as the charity to benefit from your listing, review your listing details and submit it as usual.
Candle House
Size 11.5cm by 17.2 cm
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
All I Want for Christmas
Size 15cm by 15cm
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Candles
Size 15cm by 15cm
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Joy
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Tealights
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Jingle Bells
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Christmas Bauble
Please note:
the copyright text is not on the actual cards
Please remember to click on the actual price for your country in the drop-down box
Please remember to click on the actual price for your country in the drop-down box
Science, Politics and ME
The book has not yet been published. Please return here at a later date.
International Conference DVDs
Please note:
This is for purchasing conference DVDs for UK delivery.
Please use the relevant option for delivery to Europe or outside Europe.
For more details about each conference please go to the coference website - click here
More details of previous conferences at this link - http://www.investinme.eu/IIMEC12-pastconferences.shtml
CCC Guidelines
Copies of CCC Guidelines may be ordered by contacting Invest in ME Research at this email address - info@investinme.org
Please note:
We order batches of guidelines depending on requirements.
ICC Guidelines
Copies of ICC Guidelines may be ordered by contacting Invest in ME Research at this email address - info@investinme.org
Please note:
We order batches of guidelines depending on requirements.
What is ME
ME stands for Myalgic Encephalomyelitis.
Benign Myalgic Encephalomyelitis (ME)/Post Viral Fatigue Syndrome (PVFS) is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME/PVFS has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases since 1969 (ICD 10 G93.3). Since 1992, the term "Chronic Fatigue Syndrome" (CFS) has been included in the Alphabetical Index and indexed to G93.3.
The Chief Medical Officer's Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in January 2002 recognises that "CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease
To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.
>What is ME? What is CFS? >Guidelines for ME >IiMER Awareness Leaflet
SUPPORT INVEST in ME RESEARCH
SUPPORT BIOMEDICAL RESEARCH into ME
SUPPORT BIOMEDICAL RESEARCH into ME
Please help us in raising funds for biomedical research and for performing activities related to biomedical research.
By buying an Invest in ME Research wristband you will be helping IiMER in its work as well as promoting the message that biomedical research into ME is the only way to make real progress in finding treatments and cures for this illness.
Sell them to friends, family, work colleagues - even in your local library, GP surgery or hospital.
|
IiMER Posters
We have a number of posters available which can be downloaded, or in some cases ordered from the charity. These can be useful as leaflets during ME Awareness Month and beyond. We are happy to provide leaflets to groups and to support others' campaigns - if we have the financial resources to do so
Posters
