2 January 2024
Open Letter to the OMF Concerning LDN Dosage in the LIFT Trial

Dear Dr Systrom and Dr Bergquist,

We are a group of people with ME/CFS. We are very excited about your upcoming LIFT trial, not least because we have witnessed countless successes with LDN and Mestinon in our community. We really hope that your trial will be successful, which would make it far easier for many of us to access these sometimes life-changing drugs.

We are writing to you with a concern about the study design. We were surprised to read that you intend to use a starting dose of 1.5mg LDN. Through compiling our experiences over the years, we as a community have learnt that a significant proportion of people with ME/CFS do not tolerate doses that high without a slow titration, including many people who end up benefitting from LDN.

To get a better sense of how many people this concerns, one of us conducted a twitter poll (x.com/elle_carnitine/status/1740025560238305471...) which received more than 300 responses from people with ME/CFS who have tried LDN. (Of course there is no assurance that people answered the questions accurately, but there is also very little reason for anyone to lie, and the results are in line with our community’s knowledge on LDN dosing.) The poll results showed that:

(1) Only 30% of people tolerate 1.5mg without a titration, and 54% could “definitely not” tolerate such a high dose off the bat.

(2) The numbers are worse for people with moderate, severe, or very severe disease: only 24% could tolerate it straight away, and 59% could not.

(3) Approximately two thirds of people who ended up benefitting from LDN could not have tolerated a starting dose as high as 1.5mg.

A subsequent series of polls (x.com/elle_carnitine/status/1740730061999964439...) showed that:

(1) Roughly two thirds of all people with ME/CFS who tried LDN could tolerate 0.5mg as a starting dose, and almost all could tolerate 0.1mg as a starting dose.

(2) Almost everyone who ended up benefitting from LDN could have tolerated 0.5mg as a starting dose.

On the basis of our polls and the experiential knowledge amassed and shared in our community over the years, we think you might have greater success in your trial with a starting dose of 0.5mg, titrating by 0.5mg every week as tolerated. This might reduce the number of participants having to drop out due to dose intolerance, including participants who would have been recorded as responders had they been started on a lower dose.

We hope that you will consider this, and we hope alongside you that your trial will be successful!

Sincerely,

81
signatures
75 verified
  1. Chloé D., France
  2. Emmi Skyten, Helsinki, Finland
  3. Ella MH., Lebanon
  4. Sam Page, Security engineer, Paris
  5. Hugo Mispelhorn, Carlton North
  6. Dr Naomi Harvey, Researcher, Cambridge
  7. Florencia Gonzalez, Actress, -, Barcelona
  8. Owen White, Actuary, Amsterdam
  9. Portia Zar, Perth, Western Australia
  10. Kyle Hudspeth, London
  11. Anja Fischer, Amberg
  12. Lena, Bedbound, Amsterdam
  13. Paula Knight, UK
  14. Lou Siouville, France
  15. Petr Houška, SWE, Prague, Czech republic
  16. Kirsty Yeates, Canberra, Australia
  17. Kirsty, Newcastle
  18. Marcel, Amsterdam
  19. Emily Roberts, USA
  20. Dominik Zariat, Germany, /, Hanover
  21. Alethea Reed, United States
  22. Chris T, Software Engineer, UK
  23. Nora Cabrera, Dallas-Ft. Worth, USA
  24. Olivia Johnston-Powell, Torquay
  25. Jonathan Gutz, Pembroke, Ontario, Canada
  26. Anna A., -, Frankfurt Germany
  27. Nicholas Elizabeth Faby, Unemployed, None, Forest Hills
  28. Joshua Nyce, Pennington, NJ
  29. Maggie Mcdonald, None, Raleigh
  30. Aada N, Jyväskylä
  31. Paul Keeble
  32. Natalie S., USA
  33. Katherine Neale, St. Catharines
  34. Shannon Riley, Walnut Creek
  35. Cora Kim, neuroscientist, (currently too ill to work), Berlin
  36. Katie Johnstone, survivor, Cambridge
  37. Timo Lütke Deckenbrock, Artist, Düsseldorf
  38. Emma Johnston, Disabled from ME, New Zealand
  39. Imogen H, Disabled, UK
  40. Arash Arfazadeh, Artist, Sweden, Stockholm
  41. Carly Welton, UK
  42. Taylor Boyd-Becker, USA
  43. Valentina B. Cohen, JD Patient/Advocate, USA
  44. Jonathan H., person with ME/CFS, USA
  45. Kerry Carpenter, Santa Cruz
  46. Janice Williams, Retired, Alfreton
  47. Tara, disabled by ME/CFS, Canada
  48. Arvi jansen, Amstelveen
  49. Julian W., Student, Atlanta
  50. Philippa B, Bedbound, London
  51. Amber M Vora, Disabled by long covid, Seattle
  52. Glory Brar, Unemployed/Disabled, Washington, US
  53. Lauren Cook, Full time me/CFS patient, USA
  54. Arlette Poolen, Netherlands
  55. Emma Carvell, Disabled, Romford
  56. Haley, Cape Town, RSA
  57. ELin Z,, Stockholm, Sweden
  58. Amy Hackley, Disabled, USA
  59. Galen Panger, Researcher, San Francisco
  60. Connor Cartwright, None, None, Milan
  61. Corinne Zuhlke, disabled, Summit
  62. Britt Borgh, started at 0,25 mg / Very Severe ME, Maastricht
  63. Daniel Bishop, Columbus
  64. Winston Walker, Engineer, Houston, Texas
  65. Heather Tidrick, Disabled anthropologist and social worker, None (PhD from University of Michigan), Berkeley
  66. Aubrey Flores, College Station
  67. Emma Tiemeyer, Biomedical Regulatory Affairs, Seattle
  68. Dina Dean, Chagrin Falls
  69. Celia, Bedbound dreamer, My room, Sevilla
  70. Nadia Wright, London
  71. Ruhi Snyder, Researcher, Canada
  72. Catherine Romatowski, McLean, Virginia
  73. Olivier dc, London
  74. Kate Dowding, Nottingham, England
  75. Sharleen Gonzalez, Newcastle
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