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@SNT Gatchaman Thank you very much for your comments and expertise in this field. And thank you for confirming some concerns with the Lightning Process as it relates to children and young people who have been dealing with cancer.

Yes, exactly.

Six month follow up found improvement. A confounding variable could be that the fatigue dissipated due to regaining strength in the usual way, and not from LP.

What line does this "treatment" have to cross before it is curtailed? Or is there no limit?

Also, regarding responsibility, the "key assumption" of LP practitioners is that if the clients fails to get better, the client was not genuinely taking responsibility for their health/life. This in the LP practitioner's view leaves the onus strictly on the client's shoulders.

@rainy Well put. It's shocking, especially in this context for researchers to suss out whether young cancer patients are willing to take responsibility for their health. Which seems to imply it's their fault they had cancer. That they were irresponsible, and developed cancer. And, that they...

Something being a "key" assumption doesn't make it any more evidence based, than just a plain old everyday assumption. Whatever happened to the concept that assumptions should be challenged? Assumption is defined in the Cambridge dictionary as " something that you accept as true without...

Once again, where is child protection in this situation? If one is taught by this program, or others to reframe one's pain, fatigue etc., will these study participants and clients also ignore and deny other issues, such as abuse, that causes psychological pain? To be coached to deny and...

Very good point about possible reoccurence @Peter Trewhitt Ridiculous in the first place to encourage children to ignore their symptoms. If their cancer returns, and they continue to follow the LP process of denying symptoms, early warning signs may be missed. If these children become ill...

I kind of like that new word: "witfhout".... But, more seriously, perhaps findings in autonomic dysfunction in pwLHCOVID may lead somewhere. Several years pre ME I had a nasty flu for about 7 to 10 days that made me feel quite faint when upright. I suppose this flu symptom is fairly common...

Exactly. I've always thought that was odd, and incorrect. Many pwME develop it in their 30s. So how come they waited until then to get ME? They recovered from previous viruses. All of a sudden these previously healthy active people take an entirely different tack, and decide they are afraid of...

@Snowdrop Bravo! Yes, we are not objects just waiting to be told how to live our lives. What these people say reminds me of some magazines that "politely" find fault with all of us, then suggest how we can fix ourselves. Simplistic. Being felled by ME is a tragedy. It is a serious complex...

@Peter Trewhitt Good point about exercise seen as if it is in the same realm as pharmaceutical treatment. And, what has been said many times is that if GET was a drug treatment for ME, it would have been pulled from the market. Supporters of GET for ME shouldn't have it both ways Any type...

@Peter Trewhitt @Jonathan Edwards Exactly. Not logical to impose exercise programs on very ill people who cannot accomplish activities of daily living. Or even others a little better off , who have to exert much will just to do basic activities of daily living. Really, yet another example...

Sigh indeed.

I take your points. However, in my view, we are not starting from 0 with our understanding of this disease. We have good definitions of ME/CFS in the Canadian Consensus Criteria, and the International Consensus Criteria. The Canadian Consensus Criteria (CCC) with 11 world experts, is superior...

:thumbup:

What I think too: sometimes a fine balance between hope and despair. How to tell a rookie pwME the truth without helping tip them into a black hole. I do think the public, medical pros et al NEED TO KNOW how terrible this illness is. We go round in circles with this. Or, we are taken round in...

Agreed. Self report by questionnaire may include people without ME, or in this case CFS. However, large scale epidemiological studies need to be done. They're done for other diseases: e.g. LH COVID etc. ME has been ignored for various purposes. Lack of data allows governments etc. to dismiss...

It appears the "conflict of interest" regarding Dr. Shepherd's role in the NICE Committee and MEA is that he is correctly not in favor of GET and CBT as treatments for ME, as there is no scientific evidence GET and CBT cure ME. Dr. Shepherd's sound scientific knowledge conflicts with that of...