This chat was organized by the Dutch ME Assosiation, ME/CVS.Vereniging, who has also published a series of video interwiews with dr Speight (and others).
We have edited an abstract of the live chat (her var det en link som ikke virket), to have the answers following the questions immediately. Norwegian translation. Keep in mind that a chat is a very informal way of communicating:
NN: Girl, 15, was in slow, steady improving state a year ago. Then she was 4 weeks on “rehab” with focus on increasing activity + motivation. 1-2 months later we realized she was getting worse. Still getting worse 3/4 year later, now more or less bed bound. I believe there’s a connection. Would you, generally, agree?
DD: I do agree NN – that is what we have experienced with exercise regimes.
Speight: Of course I agree! I have heard that story so many times. I wish someone would successfully sue the doctors who made her worse for the harm done.
NN: Scary, we thought the doctor (child neurologist) knew what he did when sending her there. Know of more similar cases. It’s also the only offer to those below 18 with ME in the country… They mix with CFS and have learnt from the Wessely School, it looks like. Wish we knew back then…
NN: How may we turn the neg. development back positive? Apart from staying in bed…
Dr Speight: I have heard of many very sensible parents who have made the same assumption viz that doctors know what they are doing, to their children’s cost. It might help if we could repossess the word “graded” from Graded exercise treatment, to mean graded in response to progress or worsening, allowing for easing off when the patient deteriorates.
Dr Speight: Remember ME is a condition which can turn even good doctors mad
NN: Yeah, but all doctors who’s been around ME patients for å while, should be very careful |not| to send them to places using GET. Pacing would’ve been fine!
Dr Speight: I agree, I never recommend this. What I say is that my gentle Pacing regime is like gentle GET, no need to refer!
NN: And that surely sounds wise!
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PP: What about a child starting with milder illness and it getting worse with age? Isn’t it supposed to get better with time?
Dr Speight: Thank you PP. I am afraid this sometimes happens, through no fault of anyone. Of course, sometimes it happens because of medical mismanagement (being encouraged/forced into doing too much).
PP: Thank you Dr Speight. No medical mismanagement, a low C3 count, but otherwise normal blood work, though a father with SLE.
Dr Speight: PP sounds like bad luck. The other common reason for worsening is fresh viral infections.
PP: Sounds like a plausible explanation Dr Speight. Is there anything we can do to address such viral infections? Our daughter is now 23 and has been ill since age 3.
Dr Speight: Well PP, the severe cases are protected from exposure to other people’s viruses because they stay at home. I had one mother who was convinced that the immunoglobulin I gave her son protected him from virus infections (which his brothers brought home from school).
PP: A rheumatologist suggested immunoglobulin treatment for my daughter. A specialist physician thought it was unsafe? My daughter does have a low IgG subclass 1 count. If she is very prone to infection and often has low-grade fevers, would immunoglobulin be a good/safe idea?
Dr Speight: PP I would trust the rheumatologist. When doctors say something is “unsafe” but give no reason, it usually just means they personally don’t feel like giving it. (Also, they feel “If I give it to this patient all the others will want it – just think of the extra work”!) If she is prone to infection then immunoglobulin might be worth trying. I think I told you last time about the Norwegian lass who had a miraculous response to immunoglobulin.
PP: Thank you Dr Speight. Much appreciated.
PP: Do longterm antibiotics have any role to play in the treatment of young people with ME? I am referring to mycoplasma pneumonia and chlamydia pneumonia infections – blood work positive.
Dr Speight: PP I think so. The work of Garth Nicholson from the USA justifies a trial of broadspectrum anibiotics for possible atypical infections like atypical Mycoplasmata – I see this is what you were considering. Also some US docs are using antivirals like gancyclovir (Dr Montoya).
PP: Could a compromised immune system therefore encourage co-infections? Can long-term antibiotic treatment make ME worse??
Dr Speight: PP I would say 1) Possibly and 2) unlikely. However I believe that when one treats tertiary Lyme disease with antibiotics, this can make the patient feel worse with the release of spirochaetal products as the germs are killed. This might be an encouraging sign. And of course Lyme disease can mimic ME.
PP: Thank you Dr Speight. It would therefore make sense to test ME patients regularly for co-infections or differential diseases.
Dr Speight: PP Unfortunately these tests are very specialized. Much easier to just try broad-spectrum antibiotics empirically.
PP: Good advice Dr Speight. We tried doxycyline, but it didn’t help. 🙂
PP: Does genetic susceptibility play a role in developing ME?
Dr Speight: PP Almost certainly. There are big family clusters with each member developing ME at different times (I have just had several patients diagnosed with Ehlers-Danlos type 3 and am still uncertain of its importance.)
PP: Thank you SO much Dr Speight! My best ever wishes to everyone struggling with this illness.
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Dr Speight: regarding tests, I heard an interesting presentation last week by dr. Mark van Ness from California. He had objective scientific evidence of the post-exertional worsening in energy levels and other symptoms which could form the basis of a diagnostic test.
Dr Speight: Rob – there is no “treatment”, and I don’t see many patients getting worse from benign neglect!
PP: Sorry, I have to chuckle at ‘benign neglect’ 🙂
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XX : I am the mother of two children with ME, a boy of and a girl. My question is:
What in your experience is the long-term prognosis for these children? Do most get better or do most stay sick into adulthood?
Speight: Thank you and sympathy. In general in a series I followed one third made good recoveries within 5-6 years. It is very unpredictable, but in general the milder the illness, the better the prognosis.
XX : Have you noticed any differences in symptoms for boys versus girls? I have read that more girls get ME and that they have more severe/different symptoms?
Speight: Not really. I have noticed that adolescent boys make worse patients than girls, by and large. Many of them fight their condition or indulge in denial. They don’t like joining support groups. (Of course there are exceptions.)
YY: But how are the statistics for boys/girls vs men/women?
Speight: In adults I believe it is something like 3:1, in my series in childhood it was nearer to 3:2 (ie women to men, girls to boys).
XX : Do you recommend “treatments” like vitamin B12, vit C, vit D, melatonin, 5HTP, o92 a3 oils etc to try to reduce symptoms or is there no point to give the child all these pills? (my children take all these)
Speight: My approach, XX, was to very much go along with parental suggestions on a sensible trial basis. So some got B12 etc. I used a lot of Melatonin. Some patients taught me that L-Glutamine helped with nausea.
ZZ : My 12-year old often wants to do things, like play with a friend even though it makes her worse. How do we balance this? She often says “it was worth it” when she has to rest for days after doing something fun. Do you have any thoughts on this?
Speight: I think it is very difficult. I have always erred on the side of being permissive, offering advice on a “take it or leave it” basis. Maybe I could have been a bit more directive, but it is the patient’s life after all. I would gently point out the possible relationship between say a mini-relapse and the previous pop concert/camping weekend, while trying not to sound too “I told you so”. The main thing is to not do so much that you actually cause a proper relapse.
XX : I have read that the “degree of focus on symptoms by the mother” can influence the child’s prognosis, (FITNET study) do you have a comment on this? (As a mother it feels really unfair!)
Speight: Presumably meaning influence for the worse. Sounds like a bit of rubbish/psychobabble to me.
BB: A doctor saying psychobabble ♥
XX : Do you have patients getting ME after the Swineflu in 2009? (Not the vaccine but the actual illness.) We suspect this being one of the triggers in my children.
Dr Speight: I haven’t personally seen cases as I am not in a permanent post since retiring. However I would think swine flu a good germ to cause ME.
XX : What about vaccines as a trigger? (Second suspect in my daughter’s case, 6 months after the swine-flu.) Should the vaccines be avoided totally after developing ME?
Dr Speight: Vaccines are very commonly seen as triggers, governments don’t like investigating this or being told it in case they are held liable.
XX : We tried to report it (vaccine) to the government, they refused the possibility of being a connection. At least we have tried to tell…
Dr Speight: Just as I said. We had a doctor in UK who suggested a link with MMR and autism. His career has been ruined.
Nice talking to you all, Good luck!
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