I have been active with support groups for over 15 years, with CFS and without CFS. I was the main moderator of CFSFMExperimental on Yahoo now, originally on eGroups.
I disabled the group (archives are still there, and very rich for experiences trying various things). The reason that I turned it off was that it drifted into a social support network and not Experimental treatments for CFS/FM.
During that time I observe many issues and problems. I want to share my observations:
- CFS patients are often desperate — and have brain fog. This means that anyone promising the moon will often be believed based solely on their words or claims.
- The people who read these claims will often have placebo effects and post glowing results — which feed the belief frenzy.
- Overtime, the reality is exposed BUT the material stays on the internet and is believed by the next generation of CFS suffers… None of the CFSers have the brain cells to research.
- For me, the only practical solution is “show me the PubMed studies“
- A few examples (some harmless except for the bank account, others that were disasters for some patients that have still not returned to their prior state) are the Blasi Protocol from Spain (Recuperation mineral supplement), Ampligen, Marshal Protocol.
- CFS patients are easy targets for con-artists . CFS patients are not rich targets but because of brain fog, they are easy targets. CFSer often suffer from no support or help — if a person appears pleading for help, they feel great empathy and try to help — often this results in money being sent to a con artist.
- Never send money to a CFSer that you do not know physically and can verify they are what they claim.
- There is greater community good by you spending that money on getting yourself better and back to work, then donate some of your surplus earnings appropriately (to organizations, or select individuals)
- Be very aware that a lack of executive decision ability in CFS will often result in an expensive set of supplements that you send to someone sitting on the shelf, unused for years and years.
- Supplying supplements is good, but go for the cheapest effective ones (for example 5000 IU capsules of Vitamin D3) and monitor if they are actually being used!
- Ask for postage to be reimburse!! This simple, reasonable request will often separate the chaff from the wheat. Both are CFS patients, but one is exhibiting the ability to take your kindness and bootstrap their recovery.
- CFS patients can often become very dependent on anyone that show kindness. They are desperate for help. Most CFS patients do not have the reserves to deal with a dependent person — they have severe needs themselves.
- There are always local groups! My Seattle group help each other in providing information about dealing with government and the best local MDs to go to , etc. This is awesome and the right way to help — provide information.
- CFS support groups often result in poorer outcome for patients (Yes, there are pub med studies finding that). The reason is simple, shared misery results in greater acceptance/resignation to the condition. Also, it is a social community — often the only one left; people want to belong. If they recover, their relationship to this important community in their life will radically change.
- CFSers often get totally focused on one thing and do not have mental ability to think clearly. Never try to correct them, instead provide information gently and then step away — “I disagree” –> “Each to their own thoughts”
Your heart is in the right place, brain fog can impact your decision making badly, especially in the “look ahead at longer term consequences”. Care about others, accept your limitations and keep well within your limits. Deal with the illness in yourself (the splinter in your own eye), before getting actively involved with illness of others.