Conclusion

The above is only the very outline of our results. It should be borne in mind that since we asked 589 complex questions, only the least cognitively affected and the most determined were able to complete the survey. So, our results apply to the least ill long-term patients. We hope that our study will interest a fully-funded researcher to do a more complete study of long-term ME/CFS patients—the lost and forgotten in the jungle of research.

Acknowledgements

We thank:

• all the hundreds of people who participated in the study

• all the impoverished ME/CFS patients who sent their nickels, dimes and more as support to the CAA who gave us a grant which was actually funded by the Massachusetts CFIDS Association and who advertised for us

• Fitchburg State College

• the librarians of Fitchburg State College

• Chancey Currie, a short-term patient in her 80 's who sent a generous contribution

• the physicians who advertised our study to patients

• Dmitri Sarvhin, who helped me with the illness progression graph analysis

• Tamera Schneider, who did much of the statistical analysis

• Laura Plourde, who input all the mountains of data

This study was truly an endeavor of the whole ME/CFS community.

All of us owe a sincere vote of thanks to Maggie McKenzie and Robert Fontanetta who not only had the vision to conceive of the study, but the unflagging optimism that it could be carried out by four long­-term patients without any initial funding.

Reference

1. Friedberg, Dechene, McKenzie and Fontana, "Symptom patterns in long-duration chronic fatigue syndrome," J Psychosomatic Res 48 (2000): 59-68.