No Money Available for ME/CFS? Think Again - Testimony to CFSAC

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QFormat="true" Name="Subtle Emphasis"/> <w:LsdException Locked="false" Priority="21" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/> <w:LsdException Locked="false" Priority="31" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/> <w:LsdException Locked="false" Priority="32" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/> <w:LsdException Locked="false" Priority="33" SemiHidden="false" UnhideWhenUsed="false" QFormat="true" Name="Book Title"/> <w:LsdException Locked="false" Priority="37" Name="Bibliography"/> <w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]--> Oct 13 Presentation to CFSAC

Whenever the CFS community asks for funding we always hear are that money is tight - too tight to help out with CFS - as if doing so would somehow break the budget.

View attachment 1937 The truth is there's always money for the NIH to do what it wants to do. Every year even in the tightest budgets many diseases get substantial increases in funding. You can go down the listover the past three years funding for Alzheimers has shot up $68 million, arthritis $37 million, asthma $64 million, atherosclerosis -$62 million, COPD $26 million.and - Ive just gotten to the Cs. the list goes on and on. I could give you dozens of examples of diseases that got substantial funding increases during these tough economic times. But for a disease like CFS the money is always too tight. In fact, get this, earlier in this decade the budget for ME/CFS declined as the NIHs budget almost doubled.

The point is that theres plenty of money for the NIH to do what it wants to and theres never enough for it to do what it doesnt want to do and the one thing it has made very clear over the past decade in particular is that it does not want to do is spend even small amounts money on CFS.

The Committee this session will talk with the people that hold the purse strings for CFS at the NIH: the Trans NIH Working Group - They have the opportunity to ask them what it is about the NIH that makes it so difficult for them to throw even pennies, in medical terms, at CFS.

View attachment 1938 The Trans NIH Working group should know - because under their charge of stimulating CFS research - they've done just the opposite; in fact they've overseen the greatest decline in CFS funding ever. Since theyve been in charge the 3 CFS research centers were closed. The Groups unwillingness to provide even nominal funding for what Vivian Pinn called the smallest RFA possible meant it took the ORWH three years to come up with the money to produce the Neuroimmune RFA.. After that all the Group could dredge up was a Workshop created to tell CFS researchers how to bypass the Working Group in their search for funds - an amazingly bald admission of how ineffectual they were at their core mission. Meanwhile real funding for CFS is lower than it was in 1992.

How could this happen? How could the NIH say year after year after year that even minimal resources are too much for a disease that strikes 1,000,000? The fact is that the NIH has been treating and funding a serious disorder that causes substantial disability like its hay fever and CFS is not hay fever!

Now its time to ask the Trans NIH Working Group why?

Dr. Koh last session said treatment/research centers for CFS seem so, so reasonable yet the Working Group has seemed to regard them as some unreachable fantasy. The Committee should ask why they have been advised again and again not to ask for that something for that seems to be so, so reasonable

Remember we are not asking for a lot of money. What we are asking for is basically chump change for an Institution that has a 25 billion dollar a year plus budget We at least deserve to know why they wont provide even that.

During his presentation Dr. Koh called CFS a vital area; he said that there are far too many people suffering and that we want to make progress in as many areas as possible; all nice words but weve heard them before and the words are meaningless until money goes alongside with them - and the CFS Community should be very area that none was forthcoming.

Comments

This is beyond frustrating and it is likely to stay this way until the disease is proven to not be psychological. This is the catch 22, we need funding to find a physical cause. There has got to be a way to change this and no I do not think screaming and yelling will help they situation; it will just make them think we are more crazy and that it is a psychological disease.
 
We do have to be both forceful and smart! I think we are caught in the horns of a dilemma; some people think psychology plays a role and others think physiology is the major problem and we're stuck in between two worlds - neither of which is willing to accept us. Ironically if either did I'll bet we'd be getting alot of money.
 
They know it's not psychological. There are so many reasons why this is being covered up, the list is long. But I will say this, there is no profit in curing us or really helping us. They have created the perfect patients. People who will never be well and will have to spend all their money in the medical industry. Healthy people mean no more profits.
 
Carrigon;bt3444 said:
They know it's not psychological. There are so many reasons why this is being covered up, the list is long. But I will say this, there is no profit in curing us or really helping us. They have created the perfect patients. People who will never be well and will have to spend all their money in the medical industry. Healthy people mean no more profits.
This is beyond crazy. CFS patients need to stop all these nonscene conspiracy theories, it just makes us look crazy and in no way helps us get the help we need from the goverment. The reason CFS is not taken seriously is due to researcher arrogance and the complexity of the disease. There is not simple blood or lab test that can be done to identify a CFS patient so they just assume it is in our heads, just like many diseases in the past. Look at all the other diseases that started out the same way as CFS and were not cover-ups just simple arrogance; Parkinson's, MS, Lupus, fibromyalgia, crohn's disease, and I am sure there are many more.
 
Even insurance companies might be happy to find a treatment if it kept ME/CFS patients out of emergency rooms. (If it was very expensive and needed to be taken forever they might not!). The drug industry would sure love it though - as would diagnostic labs and researchers. So there would be groups who profit. If the economic losses stats are correct the US economy as a whole would benefit from getting youngish people in the prime of their lives back to work - that's for sure.

If you look at CFS's 'allied' disorders with CFS - thats a pretty big hit to the US economy.
 

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